Our year with the Campbells: A story of love, hope and strength

Our Year with The Campbells A Story of Hope, Love and Strength

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December 25, 2013

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The Campbell family, Eli, Aaron, Maddie, Ike, Emily, Tori, Emma and their dog Ginger, from left, gather for family home evening on Monday, November 4, 2013.

The Campbells: Living the choice life Living a Wonderful Life Understanding MLD Shear Triumph: Haircuts mark significant moment Victoria Campbell: Enthusiastic, loveable, vivacious Madelena Campbell: Creative, artistic, poetic Malachi Campbell: Determined, meditative, energetic Making Extraordinary Sacrifices A Test of Faith Results in Strengthened Understanding Community Compassion Reaches Beyond Immediate Circle ‘There are Angels Among Us’ by Emily Campbell ‘We Know that Life is a Gift’ by Aaron Campbell Discovering the Realities of a New Normal Living Life and Finding Joy

2 |Our Year with the Campbells A Story of Hope, Love and Strength

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Michele Bates Jennifer Durrant Spenser Heaps Genelle Pugmire Lisa Kane Stacy Johnson David Bilodeau Doug fox David Kennard Mark Johnston

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The Campbells:

By Spenser Heaps

The sun hangs low in the sky as Emily Campbell joins her two daughters, Tori and Maddie, for a walk around their neighborhood in Orem. Breathing the cool, fresh air through blue surgical masks that conceal half their faces, the teenage sisters’ bright smiles still show in their eyes.

Trips outside, even brief walks close to home like this, have been in short supply the past month and chances to do so were virtually nonexistent over the past few months.

Living the choice life despite astronomical challenges Miraculously, through difficult months of chemotherapy, bone marrow transplants and isolation in a hospital, the young girls haven’t lost their spirit. Outside with their mother, Tori and Maddie smile, crack jokes, and hold onto each other as they almost fall over with laughter.

It’s a sight that I can’t help but smile at, laughing along with them despite the heartbreak and transformation I’d witnessed since our first meeting months ago.

Emily makes a joke about their bizarre procession as her daughters take jerky, unstable steps, occasionally catching Tori as she loses her balance and starts to fall. The girls shuffle along at an almost geriatric pace, a far cry from the two lively teenage girls I’d first met in January.

I’ve spent the last year with the Campbell family — Aaron and Emily and their children Tori, Maddie, Emma, Eli, and Ike — documenting their daily struggles and triumphs. When we first met, Tori and Maddie had just been diagnosed with the rare, and potentially fatal, neurological disease Metachromatic Leukodystrophy or MLD. Shortly thereafter, tests revealed their youngest brother, Ike, also had the disease.

Back then Tori and Maddie giggled and played with their younger siblings as I shot portraits for the newspaper. This was before they began treatment for the rare, neurological disease that would rob them of their youth and lead the girls to this point — shaved heads, masks worn to protect compromised immune systems, struggling to put one foot in front of the other.

Telling this story has been an emotional journey — seeing these high-achieving children, who grew up in exotic countries, confront this poorly understood disease that has invaded their lives. I am honored to have been welcomed into their lives, to witness and record this family’s incredible ability to forge ahead, stick together and remain optimistic, even as they fight for their lives.

Maddie and Tori Campbell get some exercise on a walk through their neighborhood in Orem in May. The girls have finished the radical chemotherapy treatment and bone marrow transplants meant to halt the rare disease wreaking havoc inside their brains, but there is a long, uncertain road ahead.

December 25, 2013 | 3

The Campbell family visits Machu Picchu on Thanksgiving in 2006.

A

t first glance Aaron and Emily Campbell and their five children appear to be just another ordinary LDS family living the “Happy Valley” dream. They own a home, have a van, a dog, go to school, work and church. But the truth is they are anything but ordinary. By any measure they are extraordinary.

It was Aaron’s unrelenting and boundless curiosity that took the Campbells to places most people only read about. Their children have climbed the high mountains of the Andes in Peru and Chili and studied the Sphinx in person. Emily said the family has even visited Dharamsala, in the north of India’s Himalayas, where the Dalai Lama lives. “We took a side trip to India when we lived in Thailand,” she said. Their friends reach from Jerusalem to Los Angeles. They have lived the good life.

Aaron is a born-and-raised Utah Mormon.

Emily, also raised LDS, moved around a bit but claims the East Coast as her childhood playground.

The two found each other, dated and married. They never took DNA samples or queried each other about

Emily poses for a photo with Ike and Eli while Aaron with Tori and Emma in Rio de Janeiro, visiting the West Desert in Egypt in 2010.

Brazil, in 2011.

Living a

Wonderful Life

By Genelle Pugmire

family genetics. Neither of them knew they were carriers of an active gene that could have severe or terminal potentials for their children.

Those children include, Victoria (Tori), Madelena (Maddie), Emma, Elijah (Eli), and Malachi (Ike). They are all bright children who have been raised on good food, good laughter, good religion, advanced education programs and opportunities of a lifetime.

The Campbells have been immersed in culture, languages and the sights and sounds of the world.

Tori was ahead of her peers and considered a gifted child with the ability to learn languages, adapt to new places and bring joy to everyone she meets.

Maddie has always been creative and musical.

She is all about sharing fun times with friends,

Tori, Maddie and Emma about to go into their Emily and Ike near the ocean in Morro de Sao Paulo, Brazil, in 2011. school in Montevideo, Uruguay, in 2008.

4 |Our Year with the Campbells A Story of Hope, Love and Strength

writing music, and making others happy. She is a quiet girl who kept many of her thoughts to herself but expressed them through the arts.

Emma is bright, smart and independent, and according to Emily has a nurturing side. Eli is a very pensive and thoughtful child. He loves to have fun and create with an engineer’s mind. He is a ringleader with his peers. Ike is a powerful child with attitude. He’s all boy.

After numerous disturbing signs and subsequent tests, in November of 2012, Tori was diagnosed with Metachromatic Leukodystrophy (MLD). Soon after Maddie and Ike were also diagnosed with the terminal disease. Now with three of five children suffering, the Campbells are no less extraordinary but they have changed.

Maddie, Tori, Emma, Emily and Eli prepare to board a flight to Florianopolis, Brazil in 2008.

Aaron and Emily Campbell and their family are on the books for being one of the rare families that have more than one child with active MLD — they have three. The odds of that happening are not fully calculated. There is only a 1 in 10,000 chance that two carriers would become a couple. While statistics show the unlikelihood of their family situation, the unlikelihood that Primary Children’s Medical Center, less than one hour from their home, would offer some of the best-known specialists on MLD in the country is even greater.

Much about the disease, its cure or lack thereof, and the varying levels in which it attacks the body, are all still questions dangling in the medical world.

The Daily Herald has taken a personal approach to covering a very impersonal disease. We have made an effort to show the reader, the cause, effect and day-to-day life with MLD. We invite readers to visit the Campbell Family Blog to learn more about this terminal disease and how one family has seized the day. Visit www.campbellmld.org, or read their Campbell Family entries on Facebook.

Shear

I

Aaron leans his head in against Tori’s so they can compare baldness in January at the Aveda Institute in Provo. top left Maddie and Emily react as a braid of Maddie’s hair is cut off on Friday, January 18. bottom left Maddie watches as other women get their hair cut off to donate to Locks of Love.

Triumph

Haircuts mark significant moment for Campbell girls

n order to beat chemotherapy at its own game, Tori and Maddie Campbell decided to have a hair-shaving party and donate their long brown hair to Locks of Love, an organization that provides human hair wigs for chemotherapy patients. As Tori said, it was the girls’ way of saying, “Back atcha, chemo.”

The party was planned at the Aveda Institute in Provo. Friends and family were invited to come and cut their hair for Locks of Love, too. A friend in Jerusalem said she was even going to cut her hair in support.

“We’re gonna do the baldsies a great amount of service today,” Maddie said.

Tori was the first to shave her head. As she sat

down in the styling chair, she looked straight in the mirror and with powerful determination said, “Bring it on.”

As the hair was braided and then shaved off, the girls got their first shot of reality; the significance of what was about to happen in their life.

“There is no turning back now,” Emily said to Tori after half her head was shaved. “Yep, there’s no turning,” Tori said.

By all accounts, encouragement permeated the room. The stylists doing the cutting said they had never seen such support. For the age of the girls they were surprised at their strength and willingness to give.

6 |Our Year with the Campbells A Story of Hope, Love and Strength

By Genelle Pugmire

“By the time I get back to school it will be long again for my senior year,” Tori said.

Maddie watched intently and cheered Tori all the way through her hair cutting.

However, it wasn’t as easy when the shears were getting prepped to cut Maddie’s hair. Maddie loved her long, brown hair and had received compliments through her life about how pretty it was. In a matter of minutes it would be gone.

In a grand show of support, one of the male stylists with a head full of hair let Maddie shave his head. It was a cathartic moment for all of them.

Then Maddie took a deep breath, sat in the chair and

Emily and Maddie see the final braid of Maddie’s long, brown hair. Knowing their hair would fall out as a result of the chemotherapy, Tori and Maddie chose instead to shave their heads and donate their hair to Locks of Love.

Tori looks at herself in the mirror halfway through getting her head shaved.

smiled at the mirror as her hair was first braided into four or five braids and then shaved off.

What many there didn’t see, but Emily can attest to, is that while Maddie was smiling in the mirror, she was clutching her mother’s hand tight enough to shut off circulation. It was not a happy moment, nor a pleasant experience, but it had to be done.

After the haircuts were over, the girls took pictures, rubbed each other’s stubbly heads, and hugged each other.

Tori and Maddie proved they were two sisters together, ready to face the storm.

December 25, 2013 | 7

In January, Ike is prepared for an MRI, a scan that would reveal if his brain had started to be affected

by MLD, at Primary Children’s Hospital in Salt Lake City. Blood tests in the weeks before had confirmed that 7-year-old Ike also had MLD.

Aaron and Eli take in the view from Tori’s hospital room at Primary Children’s Hospital in Salt Lake City on January 16, the day she moved in.

8 |Our Year with the Campbells A Story of Hope, Love and Strength

Emily touches Ike’s face as he drifts to sleep under the power of general anesthesia before an MRI at Primary Children’s Hospital. The scan showed that while Ike had the disease, it hadn’t started to affect his brain. This meant Ike would have a better chance at recovering if the bone marrow transplant could stop the disease.

“I’m 80 percent certain Tori has MLD,” (the doctor) said with a calm, kind face.

“What are our options?”

I asked as Emily’s grip on my arm became tighter.

“You only have one option, a bone marrow transplant (BMT).”

And without blinking an eye he added,

“There is a 20 percent failure rate just walking in the door.”

Both Emily and I slumped in our seats, our eyes tearing up as we processed the news.

“What are our other options?” I asked, hoping to fill the void with something easier to digest.

“What if we don’t do a bone marrow transplant?” Emily asked abruptly with her New York attitude in an attempt to change the reality of the situation.

Dr. B’s reaction was more telling than his words. I could see the cognitive dissonance spread across the face of a Harvard-trained biochemist.

It seemed to say

“Why wouldn’t you try to save Tori’s life?”

The drive home was quiet, tearful, subdued.

Hundreds of questions moving through my mind.

Aaron Campbell January 25, 2013, “To transplant or not to transplant”

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December 25, 2013 | 9

Tori sits for a portrait at her home in Orem in December. opposite page: Bored and suffering the effects of chemotherapy, Tori pulls apart the ribbon of a balloon in her hospital room in February. Most of the hair that grew back after her haircut has fallen out, her mouth has numerous sores, and the pain of swallowing and vomiting has forced her to be put on IV nutrition.

Victoria Campbell, 17, has been the family’s ray of sunshine her entire life. She loves people and in turn they have loved her. Her enthusiasm is contagious. Aaron and Emily Campbell speak deeply about their oldest daughter.

“Tori, by nature, is our happiest child,” Aaron said. “Her laugh is contagious. Her smile can brighten an entire ballroom. As a father my primary goal is to keep her smiling, not just for her wellbeing, but also for mine. I have a very pessimistic, critical side of my personality which isn’t much

appreciated at home, and Tori, well, Tori is my antidote. I know if I stand in her presence long enough she will cure me of anything that ails my cantankerous soul. Her hope, her laugh, her eternal optimism will transform my hard, analytical world view and I will soften up and become putty in her hands. All it takes is a smile from Tori.”

Just a short time ago, Tori was an extroverted teenager who enjoyed traveling and learning. She was a year ahead in school. The family had been living in South America for two years. Tori learned Spanish by

attending their public schools. That’s where the signs of MLD first appeared.

By any measure. Tori was Ivy League material.

“In my mind we could get the kids into prep schools,” Aaron said.

Emily said, “We were so focused on good stuff we didn’t have the time to worry. The decision to come back home and put the kids in public school was hard to do.”

After returning to Utah, Emily and Aaron noticed Tori was showing signs of digression in her

Victoria

By Genelle Pugmire

Campbell

10 |Our Year with the Campbells A Story of Hope, Love and Strength

bottom left: Tori dances with a friend on January 4, enjoying the dance that would serve as a final night of fun before the chemotherapy and bone marrow transplants. bottom right: As Tori prepares to move out of the hospital in February, a playful Ike puts his coat over his head and runs to give her a full-body hug. As Tori was finally able to go home, Ike was just getting ready to begin his treatment.

muscle control and motor skills. It started as little things. For instance, her walking gait had changed.

She also had compulsive behavior problems. At first, her parents thought she was just being a goofy teenager. People with MLD revert to their younger baseline personality.

“Victoria is vivacious, fun and optimistic all the time,” Emily observed. “It’s kind of a mercy.”

By 10th grade she couldn’t write, she had no math skills, she had significant reading comprehension and memory loss, according to Aaron.

The dreams of Aaron and Emily for their oldest daughter would not be fulfilled.

Tori has felt the greatest effect of the MLD, because she has suffered the longest with it, but her undaunting spirit still shines through the frustration, the pain and the debilitation of her illness.

In September, Tori was interviewed by her father in a 4-minute video. Her desire was to speak to being happy and why, with all she has suffered, she is happy.

“I just choose to be happy and live my life

according to that,” Tori said. “My life is meant to be happy, and that’s what I’m going to do.”

In the video her father asks: “How can you be so happy when you might die in a few years?”

Tori said, “I live in a home with parents who love me and would do anything for me, and I don’t know how to describe how awesome my life is. Because I choose to take it in that way, wouldn’t you?”

Again, Aaron asks why?

“If this is the only life we have, I want it to be a good one and live it to the fullest extent,” Tori said.

Enthusiastic, lovable, vivacious

December 25, 2013 | 11

Maddie sits for a portrait at her home in Orem in December. opposite page: Aaron rests his hand on Maddie’s shaved head as she sits in her hospital bed. A short time later, a nurse came in and discovered the pills Maddie had pretended to swallow and then spit out on the floor. Aaron told her that she was going to have to take several pills every day for the next year, and if she couldn’t promise to take every one they wouldn’t go through with the lifesaving bone marrow transplant. bottom right: Maddie leans in and smiles with her grandfather, Les Campbell, during a visit in her hospital room.

After Tori’s decline and eventual diagnosis for MLD, Emily Campbell watched her other children closely and noticed that Maddie was becoming more subdued, acting younger and more innocent. She had become more childlike. Her changes were less physical and more psychological.

“Madelena has always been a relentless creator of things. Art, weaving, crafts, poetry, you name it, she dabbled in it. Her defining feature has always been her boundless creativity,” Emily said.

They had her tested for MLD two weeks before Christmas 2012. It was positive. Two of the five

children had MLD, an incurable, terminal disease.

What scared her parents actually excited the teenage girl, however. Emily recalled how Maddie came rushing out of the doctor’s office after her diagnosis. She ran right to Victoria and gave her a huge hug.

“I was just happy Victoria didn’t have to go through it alone,” Maddie said. “Both of us are growing younger. When she goes through the tough times I can make her laugh. I didn’t want Tori to go through this alone.”

As the months progressed and Maddie became a chemotherapy patient, it was perhaps harder than her

young mind could conceive. Aaron remembers a night in Primary Children’s Medical Center when they shared ice cream together.

“The effects of MLD on Maddie have been mostly psychological and cognitive. Her processing speed is slow, memory is weak, and mental health is in decay. Add the cumulative effects of 20 doses of chemotherapy in four days and the side effects of anti-nausea drugs such as Ativan (delirium) and Maddie becomes a teenage equivalent of an Alzheimer patient with dementia and slurred speech.

Madelena

By Genelle Pugmire

Campbell

12 |Our Year with the Campbells A Story of Hope, Love and Strength

Life

By Madelena Campbell Emma, you are the kindest girl on earth.

You give me the patience that I need.

Eli, I love the noise that you make, Because it reminds me of home.

Ike, I love and cherish you, And I never want you to die.

Tori, I’m glad you are alive, And you are trying so hard, so hard.

One day we’ll be up in heaven, Asking who can we help.

And till then, Life still goes on.

Sometimes there’s nothing we can do, Life still goes on.

“This evening at around 8 p.m., I sat down on the edge of her bed and asked her which ice cream flavor she wanted. She looks past my face into nothingness. Tears streamed down her face and with slow, painful words said, ‘Dad, … I … really … don’t … understand … what … is … going … on?’

“As I leaned in to give her a reassuring hug, she pulled herself into my shoulder, held me as tight as her strength would allow. I pulled her close and caressed her balding head as tears streamed down both of our faces.

“After a few minutes of sobbing, she whispered into my ear, ‘Dad, I’m scared. I’m really scared, and I don’t

want to be alone.’ ” Aaron said he would have given anything to trade places and ease her pain and fears. He was searching for the perfect thing to say to her, but nothing felt right.

“Suddenly she sat up, looked me in the eye with perfect precision and said, ‘Dad, I want to eat ice cream and listen to the songs you always play for Tori.’ So we opened our ice cream and cried in each others’ arms as we let the music carry us away.”

Music is therapy for Maddie, and while in the hospital she wrote a song about her family, about love, living and dying. The center’s music therapist put it to music.

Creative, artistic, poetic

Sometimes there are things that hurt, But we will stay strong Because we are a family, And life still goes on.

No matter how hard it is I’ll always take care of you, And I feel for you, And we’re all going through this together.

Everybody thinks it’s hard but, We’re just going through life.

Mom, I’m so thankful for you inspiring me, And for taking my side and not letting go.

No matter what the cost is, you’re always there for me You’re always there for me.

Dad, I love the way you know things, And I love our dates.

I want to say thank you for all that you’ve done, And not being upset when I’m mad.

One day we’ll be up in heaven Asking who can we help.

And till then, Life still goes on.

Sometimes there’s nothing we can do Life still goes on.

Sometimes there are things that hurt But we will stay strong, Because we are a family And life still goes on.

Yeah, I just love my family More than they’ll ever know, And that’s all.

I’m sorry this happened.

You didn’t imagine your life with a disabled child, I know.

I want you to know I love you so very much.

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December 25, 2013 | 13

Emily cradles Ike as he fights through a wave of nausea in his hospital room in March. Although his young age makes him the most likely child to recover, Ike came closest to death during his stay in the hospital.

He is Aaron and Emily Campbell’s youngest child. Malachi, affectionately known as Ike, is a 7-year-old powerhouse and a soul to be reckoned with.

Ike is all boy. Facing his own mortality at such a tender age has matured Ike in a way no other experience can.

Entries from the Campbell Family blog describe the persistence of a boy with MLD. Unlike his sisters, Ike had no MLD symptoms and received a cord blood transplant instead of a sibling donor. Ike’s fight for life took place almost every day in the hospital.

“There were more than a few times when we thought we were going to lose him,” Aaron said. “Now that he is home, there is little sign that he was on his deathbed a few weeks ago.”

The chronology of Ike’s chemotherapy and bone marrow transplant shows his power to overcome. His will to live, despite facing death, is remarkable.

Ike’s biggest hurdle was taking his medications. The process involved a series of psych-out routines, yoga, breathing and squeezing Dad’s hand.

So how do you get a boy to take his meds? You develop a system, Aaron said.

“Ike takes several deep breaths and closes his eyes and hides under the covers to ‘calm down.’ He directs the nurse on exactly the order that he will allow her to give him the pills and suspensions. I must be sitting right next to him, holding the water in one hand and squeezing his hand with the other. He psyches himself up, we count to three, then to 10 and then he squeezes his eyes shut, quickly sipping first the Sprite, then downing the meds, then taking a sip

Malachi

By Genelle Pugmire

Campbell

14 |Our Year with the Campbells A Story of Hope, Love and Strength

Ike sits for a portrait at his home in Orem in December. bottom left: Ike swings his toy light-saber as Emily straightens up his hospital room. Before the chemo began to take its toll, Ike treated his hospital stay more like a trip to camp, bouncing between coloring books, playing with legos and playing games with his parents. bottom right Ike takes a moment to blow bubbles in his hospital room, both for fun and to exercise his lungs, in March.

of water. Immediately afterward, he insists that we do some yoga breathing. He sits in a half lotus pose in his bed. He tells me what he would like to visualize breathing in and out, but I must be the one to say it.

Today during his deep breaths, it was this: ‘Breathe in happiness, breathe out throw-up-iness. Breathe in happy, breathe out sad. Breathe in sunshine, breathe out shadows.’ ” Aaron continues, “We repeat his mantras several times. He is very serious about it. He usually starts by holding his hands in the Shuni

Mudra, which is where each thumb touches the middle finger. … This boy gets more out of yoga than I would expect. The really wonderful thing about it is that it does work. It helps him calm down, it regulates his emotions, and he turns to it whenever he gets anxious about taking his medicine.”

Ike’s sense of humor has also surmounted the pain. Chemotherapy darkens the skin pigment and leaves blotches of discolored skin on Ike’s body.

He affectionately started calling his belly button

“MJ” for Michael Jackson.

One family blog entry describes Ike’s recovery like this: “Ike … doesn’t seem fazed by his recovery. Now that he is eating enough, he has all of the energy of a regular 7-year-old boy, and keeping him happy inside when the weather is beautiful is a big job. He waits every night for the sun to go down so we can go outside and he can play in the front yard with his Big Wheels and the neighbor kids. He is a hard one to keep down.”

Determined, meditative, energetic

December 25, 2013 | 15

16 |Our Year with the Campbells A Story of Hope, Love and Strength

Ike tries on a sample of shiny fabric while standing on the window sill of his hospital room in March.

Ike chose this fabric to be used for superhero capes that the family’s supporters would wear in an upcoming 5K fundraiser.

December 25, 2013 | 17

Making

By Genelle Pugmire, with Emily Campbell

extraordinary

A

aron and Emily Campbell are the parents of five children, but sometimes it is hard to remember the major contributions two of these children have made to their siblings and the family. They have been the life givers. They are the children who lie side-by-side in hospital beds giving donations of bone marrow to their sisters. They are the ones who have stayed at home in Orem, not alone, but often lonely.

Emily reflects on her two special children — Emma, 12, and Eli, 9.

“There is a lot of fuss about Tori and Maddie and Ike, but what about Emma and Elijah?” she asks.

“These two kids of mine, Emma and Eli, are wildly different from the other three. Being only carriers of MLD, instead of being afflicted with the disease means their brains aren’t affected and they are considered normal. … Seeing their higher-level reasoning, intelligence and processing speed has been a relief. Seeing how they have matured and developed through this process of bone marrow transplants and the recovery of the other three kids has been a mercy and a blessing.”

It is not hard to understand that Eli and Emma have had a rough year.

“Though they haven’t had the physical trauma

sacrifices

of the transplants, they have suffered,” Emily said.

“They were both bone marrow donors for their sisters, but more importantly, they had to live in a state of flux, often without Aaron or I to be there with them.

“They’ve had to grow up really fast. How many young kids have had to contemplate the mortality of not just one, but three siblings? They have had to make do with being cared for by nannies, not having their parents physically, and many times, emotionally present, and eating a lot of sandwiches and frozen pizza.”

While Emily and Aaron didn’t make it to all of the Parent Teacher Conferences, performances and special moments, there were family and friend support groups to help Eli and Emma keep some stability in their lives. Because of necessity, these two siblings have become more self-sufficient — from getting themselves ready for school to taking care of their clothing and regulating their own schedules.

“Aaron has done everything he can to try to make things as loving and consistent as he could for the kids, while I have been up at the hospital or at my mom’s house caring for Tori, Maddie and Ike. “Aaron’s parents spend endless days at the hospital to allow Aaron time to be at home with Eli and Emma. For a while, we were split in three directions. The girls were recovering at my parents’

Eli and Maddie watch as an IV tube carries Eli’s bone marrow into a port in Maddie’s chest in January.

home (which was very clean and closer to the hospital) and I was at the hospital with Ike, and the kids were at home. Our beloved nanny went on to serve a mission for the LDS Church, so we were without a caregiver for a whole month until our new lifesaver, Lydia, could start. That was a rough month. … Through it all, our two healthy kids have shown how resilient they are. They have been rolling with it, and have risen to this very unique challenge.”

Emily said, “There have been a lot more hugs since we started down this road. The physical contact is so reassuring and calming, and neither one (Eli or Emma) is at all hesitant about showing affection, saying ‘I love you,’ or looking uncool or vulnerable.

“Remember that Emma is a 12-year-old girl and Eli a 9-year-old boy; these are the ages when kids get embarrassed by showing love, but not these two.

Eli has never been very wordy, and through this trial, he is becoming more expressive and more willing to talk. Eli and Ike, who previously had more of a roughand-tumble boy relationship, are now so caring with each other, and relish the time that they have together every day. Ike waits with great anticipation for Eli to return from school so that they can continue their Lego adventures, play Stratego or just enjoy each other’s company.

Emily holds the IV tube carrying Emma’s bone marrow into Tori’s body.

18 |Our Year with the Campbells A Story of Hope, Love and Strength

Maddie gives Eli a fist-bump as his bone marrow flows through an IV into her body in January. Earlier in the day, Eli had undergone surgery to extract his bone marrow, which was free of MLD and represented Maddie’s only chance to stop the disease.

!

We wanted Eli to see a counselor so that he could work through and process the complicated emotions and grief that he was feeling regarding his siblings’ disease.

There has been a major upheaval in our family life this last year.

Aaron on Eli:

Eli had to do a lot of growing up in a hard situation. … He has had to ponder life and death and suffering in exactly the way that you hope a child never has to.

And he is better for it.

Emma grimaces from the pain and discomfort as she wakes up from a surgical procedure to remove some of her bone marrow to be donated to her older sister Tori.

He was a sweet kid before, but now he is kind and compassionate.

He is so helpful, so solicitous of the well-being of others, and incredibly loving. After seeing the counselors and learning to process and understand his feelings (which I know, sounds corny), he is able to use words to express himself instead of being confused and acting out. He is incredibly ssweet and loves to snuggle and for a 9-year-old boy, is not at all fo hhesitant about saying “I love you” oor showing affection.

December 25, 2013 | 19

The hope I’ve felt is starting to be leached away.

As I see the girls being in more situations with other people, I realize how far we have to go before they will ever be able to handle themselves well.

Seeing our girls’ situations as they really are and not just what I want them to be is painful. Their limitations are real, and at times seem insurmountable.

Aaron hugs Tori and Maddie on April 13 as they arrive home for the first time in nearly four months. The sisters each spent about a month in the hospital, and another three months of seclusion at their grandmother’s house where they were closer to the hospital in case any emergencies came up.

… Faith and hope always prevail, thankfully, but those moments when I give in to the despair are truly awful.

I’ve been crying far too much lately, and it’s getting old.

20 |Our Year with the Campbells A Story of Hope, Love and Strength

Aaron

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In April Maddie throws her head back and yells in happiness as she gets to be in her own bedroom for the first time in nearly four months.

top Aaron, center, and Emma, right, help Ike out of the car as he arrives home from the hospital in April.

For more photos please visit HeraldExtra.com/Campbells

above Tori smiles as she sits on the couch with Aaron on her first day home.

Maddie and Tori laugh as they take a walk through the neighborhood in May.

December 25, 2013 | 21

A test of faith results in strengthened understanding

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By Genelle Pugmire

eing the parents of three terminally ill children has given Emily and Aaron Campbell pause.

They have examined their own mortality and the role faith and religion play in their lives. Excerpts from blog posts and Facebook entries reveal the extremely personal road this family has traveled.

On March 29, Aaron wrote, “We have learned over the last few months that there are only a few important questions in this life. Last week Emily and I rushed to Ike’s bedside asking ourselves one simple question, ‘What happens after death?’ ” Aaron said the question had been brewing for some time. “I came home and sat down with my wife and tried to process the news that three of my children would certainly die before their time unless we undertook a high-risk medical procedure. I, too, had to re-examine my existence along my children’s mortality.”

The week before, Ike almost died.

“Indeed, over the last few months, my spirituality, faith and religion has been stripped to the bone,” Aaron said. “Yet, last week as I sat next to Ike, I was simply a father seeking answers to simple questions.

At this time, hope for my son rested on one simple event in the world’s history: Did Jesus rise from the tomb on the third day?

“For me, I truly believe that he did. Not just because it is an easy way to answer the question about death and give me peace of mind, but because I truly, deeply feel that he did. I feel deeply that there is a better life after death for me, my family, my friends and all of my brothers and sisters on this Earth.”

What gives the Campbell family its strength is that the children believe and have faith and trust in what their parents have taught them, and they have all seen it in their lives. They read scriptures

together, pray together and meet as a family once a week to discuss what really matters.

Emily said she has had to analyze her faith system, questioning if she really believes the doctrine she has been taught for years. “This experience with the MLD and how it has affected my family has forced me to seriously consider the Gospel of Jesus Christ.

“My faith has been ‘stripped down’ to the point that only the core doctrines matter to me much. I feel like I’m able to separate the culture of the church from the truth of the gospel. The truth remains, the rest falls away,” Emily said.

Emily said she looks forward to when all things will be restored and her precious girls will have their true selves back.

“This isn’t a fairy tale, it is real, and there is a palpable power in the gospel that I feel and cling to. Praying and reading the scriptures allow me to access this peace, comfort and love,” she said.

22 |Our Year with the Campbells A Story of Hope, Love and Strength

top right Tori receives the sacrament from church volunteers in her hospital room in February.

bottom right Aaron helps adjust Ike’s mask in November while the family attends church in Orem. This is the first time Ike was being allowed to attend church since before his hospitalization, but he must wear a mask to protect his still-weak immune system.

Community compassion reaches far beyond immediate circle of friends, family

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By Genelle Pugmire

hile their faith gives the received to our medical trust. The donation came Home Evening when the phone rang.

Campbells solace, it is through with this message: ‘My prayers and force be with “I get a phone call from a guy working with their community of friends, you. I know your children are young and will go several bands who will be appearing at the California family and associates their through this moment with good energy and will Roots Festival. … And no, it wasn’t a wrong number. burdens are lightened. Acts recover well. I send you all my love. Be strong and It turns out that several high-minded people in of service range from additional caregiving from with God, always.’ ” California have seen our Campbell MLD blog and grandparents and extended family, to school peers Emily said his response was timely, more Facebook pages. Several of the Reggae bands and throwing blood drives, dances and parties to benefit uplifting and more needed because it was the their managers have indicated that they would like the family. It is as if the world has encompassed the morning Ike was in his most critical condition. our family to be the recipient of a charity event at the Campbells in a blanket of support and love.

“Truly, this was an answer to my prayers, not festival.”

In her Thanksgiving Day 2013 blog, Emily the money, but the message of hope and love that he “I walked back into our Family Home Evening Campbell turned her thoughts to gratitude: so openly communicated to me. And it came from a with nervous excitement to tell Emily the good “It may seem counterintuitive to say this, but, complete stranger who had many reasons to hate me. news. ‘… We are going to California to spend your during this hellacious birthday weekend year our daily prayers and backstage with thoughts have been filled High Tide, Slightly with more gratitude and Stoopid, Dirty Heads, thanksgiving than during Matishyahu, 40 other any other time in our lives. bands and 20,000 Today we are celebrating reggae fans.’” Aaron the kindness and love of then writes, “There family, friends, church, isn’t a single tattoo community, schools and so in this entire family many other people we have and there is more hair never met. From the bottom on one festival-goer of our hearts we thank you than on all of our all for helping our little heads combined. The family over the past 12 only mind-altering months. Thank you so much substance we have for everything.” in the house is some So just what has been fermented orange done for the Campbells? juice in the fridge.

It started a year ago with a And yes, they knew we special dance for Victoria were Utah Mormons, by her peers because she complete with modest would not be able to go to clothing, missionary her prom or other dances haircuts and merit during the year. That first badges. … I’m still event has exploded into bewildered by the As Tori and Maddie rest in the family’s car, Emily cheers on friends coast-to-coast awareness of invitation. Bewildered running in the Elevate 5K in Orem in April. The run raised money for their unique family plight. and grateful and the Campbells and two other families in need.

Emily recalls a most humbled.” unexpected gift from an unlikely Samaritan: He knew that I was Mormon, and as I looked through “A few weeks ago a sizable donation was made his Facebook page, I knew that he cared deeply and To read the full version of this to our Family Medical Trust by someone whose had fought valiantly for gay marriage. Yet, in spite of name I didn’t recognize. Somehow, an email of mine that, this brother of mine followed his heart and came story and see a photo gallery, had been passed around from a friend to a small to my rescue when I needed it the most. Rarely have circle of gay designers and artists in New York and I experienced such a humbling moment of spiritual please visit California,” Emily said. “Eventually it made its way clarity than at that moment.” to a gay erotic artist, who, without any reservations, Aaron recalls on a Monday evening when the went online and made the largest donation we’ve family, now home, was trying to get through a Family

HeraldExtra.com/Campbells

December 25, 2013 | 23

‘There are

Angels among us’

By Emily Campbell

Community love, support buoys Campbell family We have certainly been carried through this ordeal. We have never had to face it alone. It was a soul-crushing experience to find out that three of our children were suffering from MLD. We are grateful that we came back home to Utah from living overseas when we suspected that there was something wrong with our children. There is no other place on this Earth where we could have found more support, more love, more hands extended to serve and bless. The neighborhood, school and church community have outdone themselves finding ways to comfort and lend strength to our whole family.

Trial and adversity are great teachers and builders of character. We have undergone our own transformations, but I have seen so many examples of how others have been blessed in their very efforts to help us.

Many young people who know our children have reached beyond their own comfort levels to spend time with Tori and Madelena when they were sick and suffering and miserable. My own memories from my childhood of reaching out to help others in need have shaped who I am and how I see the world, and I’m sure that the kind people who have extended their love to our family will remember the good feelings that came along with their own acts of true charity.

The times when friends and friends’ parents would send a note or a gift would immeasurably brighten the day for my girls and Ike. As a busy mother, I appreciate the time that other parents would take out of their own days to spend time helping ours. The young children who would sell lemonade or have a garage sale so they could donate money to the hospital or toward our family’s medical bills inspired

me. I was proud of their selflessness and their blossoming awareness of the needs of others.

This is how a real community is built, by bearing another’s burdens, by uniting to serve others and working for a common cause.

The Cherry Hill Elementary, Lakeridge Junior High and Mountain View High School communities have been so supportive, from making decorations for the hospital rooms, to running a blood drive, to sponsoring a Family Fun Run to help make their Make-A-Wish dreams come true. The schools have worked with us to achieve our radically altered educational goals for our kids, and sent a tutor to help Ike catch up to his peers.

Others in the community reached out to sponsor our family in the Elevate 5K race. The girls’ dentist waived half of their dental bill and so many have offered monetary gifts. Countless people have given up their own time and talents to bless us. The lovely quilts and warm loaves of bread and carpools mean so much.

Sometimes it is hard to keep our spirits up when the children’s medical needs and their mental and physical deterioration seem so overwhelming. But every time things looked bleak, we would be reminded of the love of our friends and family and community. It would buoy us up and keep us from slipping under the weight of so much sorrow.

We haven’t had to endure this tragedy alone because of the choices our community has made to care for the downtrodden, the sick and lonely. There are angels among us, doing good and supporting others. Utah, we love you and couldn’t walk this road alone.

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24 |Our Year with the Campbells A Story of Hope, Love and Strength

Emily and Maddie share a quiet moment in Maddie’s hospital room in February.

right Emily helps Tori out of her wheelchair as she picks her up from school in October. bottom Emily, Ike and Aaron play chess in March in Ike’s hospital room.

December 25, 2013 | 25

‘We know that is a

By Aaron Campbell

Life Gift’

Difficult decisions made through prayerful guidance

Making choices is an inevitable part of life. Like everyone else, I do my best to base my decisions on valid facts and make choice available with the information at hand.

I remember the cold December afternoon 2012 when, after looking at Tori’s MRI, Dr. Nelson told us that he was 80 percent certain Tori had a terminal illness called MLD. I then learned that the statistical probability of inheriting MLD was 1 in 40,000 for infants and 1 in 500,000 for teens. Over the course of that first meeting, every fiber of my body was reeling from the news that our sweet Tori was dying and that there was a 25 percent chance that each of our other kids would also have inherited this terminal illness. I knew and felt the weight of having the future of my chidrens’ lives resting in my hands.

ramifications and efficacy issues with sibling donors, identifying an 80 percent blood match, pursuing a more aggressive chemotherapy treatment to eradicate their existing bone marrow yet possibly killing them and exacerbating their MLD, pursuing a less aggressive treatment and risking engraftment problems, going public and getting emotional support for the children as they recover in the hospital, eating foods that make them happy yet expose them to possible bacterial infections, isolating the kids to keep them from getting sick as they rebuild their immune system, working with doctors to determine the right medicines to increase white blood cell and enzyme production yet also risking graft vs. host disease.

In my mind it was impossible to feel confident about any decision because there was so little information available about adolencent MLD Bone Marrow treatment. The sample size of teenage MLD transplants was too small and too varied for any statistical validity. Doctors around the world had their own opinions and variations in treatments were filled with artificial innuendos and anecdotal success that was difficult to verify in such a short amount of time.

We only knew one fact. If we did nothing there was a 100 percent chance that Tori, Maddie and Ike would die a slow and debilitating death and likely not make it to their 22nd birthdays.

Over the course of nine months we were expected to gather, learn, assess, pray and decide the fate of our three children. It was overwhelming and emotionally crippling to do research and also be an example of strength for our children.

We opted for Bone Marrow transplants because it offered hope for our family. After starting the transplants it quickly became apparent that we made the decision without all of the facts. We were under the false impression that a BMT outcome was binary: complete failure (death) and complete grafting were only two of the hundreds of possible results.

The sheer amount of variables involved in a successful Bone Marrow Transplant included finding a bone marrow donor, gauging ethical

For Tori we chose a milder chemotherapy to reduce the risk of death during the transplant and accelerated MLD affects during the treatment.

26 |Our Year with the Campbells A Story of Hope, Love and Strength

While Emma, her sister, was perfect marrow match we knew that Tori would engraft quickly and likely avoid graft vs. host disease. However, because Emma is a carrier, we also knew that enzyme production would only be 50 percent of normal. Consensus among doctors was that the disease could be halted with 25 percent enzyme production.

After 10 months, it appears that Tori’s transplant was moderately successful, but she isn’t getting the amount of enzyme that she needs to halt the disease. In effect we shaved off two years of highlevel functionality and slowed down her disease progression. It is

heartbreaking to know she is slowly slipping away into darkness.

Maddie’s treatment and recovery has been picture-perfect. Like Tori, she also received her bone marrow from a sibling carrier (Elijah). Being two years younger, the MLD hadn’t progressed as much. After 10 months we are starting to see improved cognitive and psychiatric improvement.

Malachi was a normal 7-year-old boy. He had no symptoms when we pulled him out of school, shaved his head and subjected him to a bone marrow transplant.

Ike’s bone marrow came from an anonymous umbilical cord donor.

With cord blood he had a higher chance of death during transplant, yet a higher chance of long-term success in halting the disease.

Twice while in the hospital we said our last goodbye to him as he battled pnemonia and bacterial infections. Yet, miraculously, he pulled though minutes before being taken to the ICU (from where immunocoprimized kids rarely return).

We did out best to seek divine guidance to research and make these decisions. Sometimes we felt inspired to make certain decisions, at other times we were left alone to sort out the best path. In this process we learned that we aren’t much different that the millions of other parents around the world who cry, plead and stress about their choices and the choices of their children.

The only thing we can do it make the best choice possible with the information at hand, then move on and live life to its fullest. Regardless of the short- or long-term outcomes, we know that life is a gift and today we choose to make the most of the time we have left together as a family.

We are grateful we have one more Christmas together.

top Aaron lifts Ike into the car after Ike underwent an MRI to find out if the MLD was affecting his brain at Primary Children’s Hospital in Salt Lake City in January. right Maddie snuggles up with Aaron as he reads through the Bible before starting a lesson during Family Home Evening on Monday, Nov. 4. opposite page Aaron jokingly falls across Maddie and Tori at their home in Orem in April.

December 25, 2013 | 27

Discovering the realities

New of a Normal

By Genelle Pugmire

Campbell family establishes routines to accommodate a post-diagnosis reality

I

t was a horrible start to a morning that didn’t have anything going for it in the first place, Emily Campbell said. It was the day she was forced to look at photos from the past.

“I woke up knowing that I was going to have to delve into our stash of pictures from our previous life. Life before everything got turned upside down

by MLD and my kids’ transplants,” she said. “Those pictures I had been fastidiously avoiding for the last 12 months. Avoiding because I didn’t want to see how our girls used to look. The videos were the worst. Seeing Tori and Maddie dancing and singing and laughing was heart-rending. Looking at the pictures of them climbing trees and cliffs nearly put me over the edge. We were pretty carefree, and I couldn’t see any worry on anyone’s face. I felt as if I were caught under an avalanche of snow and I couldn’t breathe.”

Emily had the task of finding a photo and writing a half-page summary of her family.

“The photo and summary of our family’s illnesses and treatment was going to the Festival of Trees, a fundraiser for our hospital, Primary Children’s Medical Center, in Salt Lake City,” Emily said.

The photos, reminders of what used to be, were juxtaposed beside the vividness of the Campbells’ new normal.

For example, Emily said they used to power through bedtime, but now they enjoy the time helping the children get ready. It is more precious and sweet than before.

After months of seclusion the children can now attend church and school, see friends and have some social interaction.

Emily outlines a normal day, that goes something like this: • Wake up around 10 a.m. to take medicine. The girls are great at taking their meds now. Maddie only occasionally tries to hide her pills, and Ike is doing so much better about taking his meds.

• A slow, leisurely breakfast after they take their meds. The girls do everything slowly now. Even eating a bowl of cereal can take 20 minutes. Ike eats slowly too, but his reason is the nausea that sometimes catches him in the morning.

• Lydia, our mother’s helper, helps get the kids changed and gets them started on their routine of homeschool work (which is on the very easy side, but is more of a warmup for their brains), Lumosity (a brain-training program that measures and tracks progress), stretching (which the girls hate), crafting (to help with fine motor skills) and before you know it, it’s lunch time and then nap time.

Emma, right, helps Tori walk down the stairs to her bedroom on Monday, Nov. 4.

28 |Our Year with the Campbells A Story of Hope, Love and Strength

• After naps they can watch a documentary or movie or have a friend over. Both of the girls yearn for social interaction, but something happened during

the transplant, and they have a difficult time in social situations. They process information so slowly that it is hard for them to keep up in conversations, and they do much better when it is one-on-one, even though they relish having groups of people over to visit.

• After dinner the family takes a walk in the twilight. The kids do not fight bedtime anymore and getting them to sleep, while a big ordeal, isn’t fought by anyone. They all like to be tucked in, which is quite sweet, because how many 16- and 14-year-old girls will let you have that precious time with them?

“So our new normal is pretty boring and structured, which is strange for us, with excitement and spontaneity being our previous M.O.,” Emily said. “Aaron and I feel somewhat stifled by the predictability and sadness of our kids’ current situation. Luckily our mother’s helper, Lydia, can be with the kids if we really need to get away for a little bit, even if it is a trip to the hardware store.

“In the same way that Madelena is able to find happiness and joy and pull herself out of her funk, when she gets out of her own misery to serve someone else, I, too, am able to make the changes I desire

when I get out of my own head and focus on serving others,” Emily said. “My kids, who were so fiercely independent before, are now like little children. They are vulnerable and dependent in the truest sense of the word. Tori, as she continues to deteriorate, must literally be supported as she walks, eats and even sits in a chair. I must take care of her every need, and now I must even spoon-feed her when she can’t remember how to hold her silverware. She is operating at a mental age of around 5 or 6, and doesn’t have the physical abilities to even dress or bathe or toilet herself. I don’t resent this kind of service. It is a joy.”

left Maddie points the way as Aaron tries to find her next classroom on Maddie’s first day back in school in August. right Tori grimaces as Emily helps her swallow some pills at home in August. As the MLD continues to cause her brain to deteriorate, Tori has begun to lose the ability to swallow.

Ike drinks a smoothie in April while still wearing his feeding tube on his first day back home. bottom right Lydia Compton helps serve Tori her dinner at the Campbells’ home in Orem in November. The Campbells hired Compton to help take care of the kids now that Tori and Maddie need extra attention.

To see more photos of the Campbells please visit HeraldExtra.com/Campbells December 25, 2013 | 29

Living Life and

Finding Joy

By Genelle Pugmire

Before attending a school dance, Tori gets help with her makeup and hair from Emily and Traci Hartman at the Hartmans’ home in Orem in November.

W top Aaron and Emily help Maddie get ready for her first day back at school in August.

bottom Tori holds on to Emily for support as Emily helps her get some food during a family Thanksgiving at Emily’s sister’s home in Payson.

30 |Our Year with the Campbells A Story of Hope, Love and Strength

Despite trials and challenges, the Campbell family grows in happiness

ith all of their children home, and a year of MLD behind them. Aaron and Emily Campbell have a new living paradigm. With or without disabilities, their family will live every day differently than before. New issues will arise, abilities will decrease, every day will be its own package of joy and challenge.

“We have always believed in living life to its fullest, but now we plan to follow the admonition of (country musician) Tim McGraw to love deeper and speak sweeter,” Aaron Campbell said.

Aaron said the first thing is the family doesn’t take anything for granted anymore. They have lived an exceptional lifestyle.

“When we came back to Orem, we found there is so much more joy and happiness in life every morning, every afternoon.

For me there is an overwhelming sense of gratitude every day.”

While Tori, Maddie and Ike are still in extremely delicate condition, the family has chosen to enjoy its quality of life and not fret about the quantity that is left. The children are back in school, they go to dances, play with friends and continually struggle to find the silver lining in their lives.

As a married couple and team leaders of the family, Aaron and Emily Campbell have developed a deeper level of trust and love.

Aaron said he longs for normal dates with his wife, and Emily needs to hear the words “I love you so much.”

“Our relationship has taken an amazing leap forward. I respect her and love her more as a parent,” Aaron said.

l Friends Brigham Talbot, left, and Jarom Brandow, right, help Tori up the steps of a friend’s home before the group attends a 1920s-themed school dance in November.

The children are finding joy in friends, in service to others, playing with their new therapy dog, Ginger and just spending precious time together.

“Our way of relating to our kids has changed us.” Aaron said.

The way the siblings relate to each other has also changed. Emma has taken on sort of a mothering role and makes sure things are getting taken care of. Eli and Ike share more time together and Tori and Maddie are making moments count by sharing their personal gifts of happiness and caring.

“As our family life descended into chaos, helping hands appeared out of nowhere to ease our burdens and lighten our load,” Emily said. “Our lives literally rested in the hands of surgeons at Primary Children’s Hospital, carpool drivers who kept our children safe to and from school, neighborhood cooks who supplied us with awesome food, computer programmers who picked up the slack at work and family members who housed recovering girls and took turns sleeping at the hospital. Angelic hands have been everywhere.”

Maddie sings and dances as Kelly Clarkson performs at Stadium of Fire in Provo on July 4.

December 25, 2013 | 31

Utah Valley Regional Medical Center is proud to help present this holiday story of love, strength and hope in tribute to the many families who come through our doors facing similar struggles and challenges. It is stories like this that inspire all of us. As a non-profit hospital, our mission includes a focus on providing the highest quality care at the lowest appropriate cost. In more than 25,000 cases last year, patients treated in our Utah County hospitals received financial assistance to help cover the cost of their medical bills. To help us in fulfilling our mission, please consider supporting the Intermountain Foundation at Utah Valley.

801-357-7600 utahvalleygiving.org

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Many people have been asking how they can help the Campbell family financially. They have set up a Family Medical Trust to help pay for ongoing medical expenses and teamed up with the Craig Perry Foundation and Elevate Charities so online donations can be tax-deductible. You can also mail a check to:

The Craig Perry Foundation c/o Campbell Medical Trust 51 West Center #153 Orem, Utah 84057