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Maurice Sweeney with his wife, Jannette.

LASTING LEGACY THE SWEENEY FAMILY EXEMPLIFIES COMMITMENT TO COMMUNITY Writer / Beth Beckwith Photography Provided

Maurice Sweeney is the youngest child of the late Dr. Pruitt Owsley Sweeney, who was a renaissance man born in the late 1800s in Liberty, Kentucky. Respected in the community, the doctor and his wife Susa raised their four children on their 312-acre dairy farm outside of Middletown, purchased in 1947. Dr. Sweeney purchased the land after selling property he owned across from Louisville Gardens at 5th Street and Muhammad Ali Boulevard.

That property was sold to businessman James Graham Brown. Dr. Sweeney used the proceeds to purchase the property he named Happy Hour Farm.

Before there was a Locust Creek, the subdivision in east Jefferson County, there

was Happy Hour Farm. Until December of 1999, Maurice maintained 100 head of beef cattle. That same farmland now has more than 400 homes.

Maurice believes nothing builds character like taking care of cattle and milking twice a day every day, as his mother and three siblings did after Dr. Sweeney died in 1960.

While Maurice’s brother Deryl was a captain in the Marine Corps and his sister Phyllis was the first black teacher at Anchorage Public School, Maurice followed in his father’s footsteps, with involvement in more than 30 boards and commissions.

“A lot of people go full-circle following in their parents’ footsteps,” Maurice says.

“Their dad is a lawyer, they become a lawyer - dad’s a doctor, they become a doctor.

My dad was president of the NAACP in

Louisville from 1936 to 1938 and I was president from 1983 to 1984. I thought that was kind of cool.”

While Dr. Sweeney fought for equal use of public golf courses and the ability to attend the Iroquois Amphitheater in 1947, many years later Maurice led the participation of minority venders during the PGA Ryder Cup, and his brother’s trucking company helped in the reconstruction and modification of the Iroquois Amphitheater.

Although it took years, Dr. Sweeney was successful in his efforts, which allowed blacks to play golf at public golf courses and led to equal pay for black teachers.

As a child Maurice had no idea that his father contributed so much to the black community in Louisville.

6 / MIDDLETOWN MAGAZINE / DECEMBER 2020 / atMiddletown.com

One early example of Maurice’s leadership ability was at Eastern High School. Maurice helped start and organize the Students to Promote Better Relations club and became the school’s first black student council president. Through the decades, Maurice has worked for the Kentucky Commission on Human Rights, National City Bank, and the Kentucky Transportation Cabinet, where he spearheaded the governor’s management trainee program and ran his brother’s businesses when he died in 1999.

Maurice is greatly inspired by his parents, who worked diligently to bring unity and equality to his family and society at large. His mother, who was raised on her family farm in western Kentucky, obtained her home economics degree from Kentucky State University and was a home economics teacher. In addition, Mrs. Sweeney maintained the farm after Dr. Sweeney’s death, and it was her perseverance and exemplary management skills that contributed to the farm’s success as a diary and beef cattle operation.

“I had a lady, who at the time was 101 years old, eagerly tell me stories about selling turkeys to my father,� Maurice recalls. “One time I was at the barbershop and a man told me my dad was like Michael Jordan. The guy had missed my father visiting his school for a speech, and everyone told him he’d really missed out on something special.�

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The farm was a show place at the time, featuring the first modern milking parlor in Jefferson County. School classes would often come from the city for field trips and venture to the farm to witness how milk was processed.

Maurice recalls a specific adventure on the farm.

“While helping a friend move to Jeffersontown in 1999, there was a drought that year and it was difficult to keep hungry cows fenced in,” he says. “My mom called me to say, ‘Maurice, you need to come home now. You have 100 head of cattle out on Shelbyville Road.’ Our neighbors had gathered the cattle until I got there, but were unable to get them back to the field. Like the pied piper, once I got there, all 100 peacefully followed me back to greener pastures.”

Although many homes have been built around the pasture where cattle used to graze and where he hosted his famous annual goat roast, Maurice still reminisces about the farm days by spending time in the basement, where he repurposed wood from the original house.

With the wisdom and strength of his lineage flowing through his veins, Maurice proudly pays respect to his family and their heritage on a daily basis. Over time Maurice has collected letters, articles, news clippings and photographs that document his family impact on society. He’s currently retired but still volunteers as a member of the Eastwood Village Council.

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Sharon Ray, Michelle Thompson and Angela Howard

SANTA’S LITTLE HELPERS, INC. N O N P R O F IT ASSI STS LO C A L FOST E R C H I L D R E N Writer / Julie Engelhardt Photography Provided

When you hear the term “Santa’s Little Helpers,” visions of tiny creatures scurrying about St. Nick’s workshop making toys might come to mind. Yet for one woman, that phrase has a very different, and very special, meaning.

received three degrees - a bachelor’s in sociology, a master’s in higher education administration, and a master’s in counseling psychology. She and her husband Wynobie have a young daughter, Alena. Williams is an educator as well as a book author and screenwriter. She also has an unwavering love for the Christmas season, hence the name of her nonprofit.

Michelle Thompson Williams is the founder of a local nonprofit organization called Santa’s Little Helpers, Inc. (SLHI). Williams started the program three years ago as a way to assist Jefferson County’s foster children population. Their mission is to build selfesteem and confidence in foster children through a foundation of literacy, personal growth and development. Their goal is to help impact the livelihood of foster children in Kentucky and Southern Indiana by providing them with the tools to become productive citizens.

“When I was a kid, the best time of the year for us was Christmas,” she says.

“Things were calm, things were happy, and things were just good. Christmas was just a joyous occasion.”

Williams was raised in a household of eight children - six girls and two boys by a single mother, Earlene Thompson.

After high school, Williams attended the University of Louisville, where she

Her mother was a homemaker for a while, and during Christmas she would bake cakes and cookies as well as gingerbread houses from scratch.

She, like all children, couldn’t wait until Christmas morning, anticipating what presents she was going to receive. However, there was another reason she loved Christmas so much.

“It was because of my mom,” she says.

10 / DECEMBER 2020

“I remember walking into the kitchen and seeing the patterns for the houses, and smelling the gingerbread,” Williams says. “I would watch her put these houses together, very meticulously, and they were decorated with all of this candy. It was just amazing.”

For Williams, it was a magical time. It wasn’t just about the presents. It was about the smells, the feelings, the sounds of music, and the all-around Christmas season.

Williams’ mother worked tirelessly to provide for her family, as well as a young man she brought into her home and fostered for some time. Yet, there were occasions when she did turn to others for help.

“That very first year we were on our own, she signed us up for a program through the Chamber of Commerce so we could have gifts,” Williams says. “I remember going and sitting on Santa’s lap and having pictures taken, and then they’d send us home with lots of presents. There were people out there stepping in to help those in need.”

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Williams says her first memory of this was when she was about eight.

Many years later, Williams and her daughter were at home watching Christmas movies on TV when a particular show caught her attention. It was called “Christmas Oranges,” which is about a foster home for young girls who receive an orange for Christmas if they behave.

“This movie was part of my inspiration for the organization,” Williams says. “I had a thought - there are kids out there, like foster children, who may not receive anything for Christmas. This feeling of sadness just came over me, and that is when I came up with Santa’s Little Helpers, Incorporated.”

Williams told her daughter about it, and she became excited and wanted to help her mother. Her husband also wanted to lend his assistance.

Williams began doing research on foster

children and the services provided to them in the Louisville area, and she also gathered information about residential facilities. She pulled her board together, which consists of Williams and her sisters Angela Howard and Sharon Ray. Their very first program, Pajamas for Children, took place at Christmas time in 2017.

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SLHI also works with Operation Open Arms, Inc., a private child-placement agency whose mission is to provide loving home environments to children whose mothers are incarcerated.

“I reached out to Joann Childers, who is the activity director at St. Joseph Children’s Home in Louisville,” Williams says. “I wanted to establish a relationship

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with them. I asked her if they needed pajamas for the kids, because pajamas are universal - everyone needs pajamas.

She and I worked together and compiled a list of the children and what sizes were needed. We then went shopping and got the pajamas, wrapped them up and dropped them off for Christmas. The kids were super excited.”

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“We work with them to provide bags of supplies filled with clothes, pajamas, books, toys, underwear, socks and other items,” Williams explains.

SLHI has other programs in the works.

“We’ve implemented a new program called Keep Our Kids Reading,” Williams says.

“We’ve noticed the access to books is limited due to libraries closing and schools being closed due to COVID-19. Libraries have made huge efforts to be in different spots and give out books that way, or allow people to schedule appointments for pickup, but we wanted to make books a little more accessible.”

In order to make books available to children, SLHI took two steps.

“We purchased a Little Free Library and put that right outside of the Hobby Lobby store in the Springhurst Towne Center,” Williams says. “We had to go through their

nonprofit and actually purchase the library.

Basically, it was about $600 because you have to buy the library plus you have to buy the post it sits on. The libraries are made by the Amish.”

The library was shipped to Williams, who then contacted the property manager at Springhurst to see if she could install it next to the store.

“He was amazing,” she says. “He was excited, he said this will be great, and said they wanted to do more for kids anyway.”

Her husband painted the library and helped install it at its spot.

followers on social media during the next couple of weeks,” she says.

The grand opening for the Little Free Library took place on July 24. The event also served as a way to introduce the community to Santa’s Little Helpers, Inc. According to Williams, more than 120 people came.

Williams checks on the Little Free Library every Sunday to see how many books are still there, and if they need to add new books.

“Our visibility grew and we gained a lot of

“Up to this point we’ve put in over 150 books,” she says.

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Besides receiving books from the public library, SLHI also received five boxes filled with books, even before the library opened, from Half Price Books on Westport Road. They also have a partnership with the Scholastic Literacy program.

“This allows us to purchase books at a discounted price once all of the books we had are gone,” Williams says.

Another program SLHI runs is called the Book Bag Project.

“We work with the Cabinet for Family and Health Services to donate bags with books in them,” Williams says. “These are given to social workers, so when they pick up a child they can give them a bag to put their belongings in.”

SLHI also began providing virtual story time programs in October, starting with a fall-themed program, then a Thanksgiving

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SLHI has many new plans for the upcoming year.

“In 2021 we will be starting the Future Forward Program,” Williams says. “With this program we’re targeting high school-aged kids. The purpose is to help these children plan for the future. Our focus is going to be helping them explore different pathways

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based on their passions and interests, to guide them to their next step after foster care.

We want to give them their toolkit so they are ready to move forward in life.”

For more info on Santa’s Little Helpers, Inc., including donation details, go to santaslittlehelpersinc.com and call 502822-6819. If you’d like to donate children’s books to their Little Free Library, the library is located at 4301 Towne Center Drive in Louisville.

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Holly Jolly

STORY TELLERS How Anthology Senior Living is spreading holiday cheer across Louisville Do you remember the magic of your grandparents’ storytelling?

Gathered around the Christmas tree, curled up with a cup of cocoa, the whole family would go silent to listen as the words leaped off the page. At Anthology Senior Living of Louisville, residents are looking to bring their holiday traditions into your home this Christmas season.

“Christmas is one of my favorite time of year,” Anthology resident, Mary K. said. “I’m a very sentimental person and the joy of season makes me feel closer to my family and our traditions.”

Residents at Anthology Senior Living of Louisville are partnering with a local radio station, 106.9 Play, to spread holiday cheer in the Louisville community.

“With the holidays looking very different this year, we have to build connections via phone calls and video calls,” Anthology of Louisville Director of Virtue Memory Care, Molly Gunn said. “This gives loved ones and those that are missing their grandparents an opportunity to have them read Christmas stories and for all of us to feel closer although we are far apart.”

December 9-25, tune in to 106.9 Play at 9 PM to hear a Christmas story read by local seniors. Titles will include A Christmas Carol, The Night Before Christmas, Rudolph the Red-Nosed Reindeer, and more.

“With the 2020 Christmas Season quickly approaching, we felt, having our favorite Christmas stories read by real grandparents, just like they did when we were kids, would help bring a little more joy to our community.” Eric Fow, GSM of Summit Media said. “We are so happy to partner with Anthology Senior Living of Louisville to help bring these stories to life!”

The partnership with 106.9 PLAY is just a small facet of Anthology Senior Living’s commitment to keeping its residents engaged. Anthology Senior Living’s physically distanced social calendar of activities includes happy hours and catered programming to resident interests, all while keeping residents and their loved ones safe with robust safety protocols.

Anthology Senior Living offers personal care and memory care surrounded by a beautifully designed community with welcoming indoor and outdoor spaces. It’s a place where life is enriched by quality care, ample amenities, and worldclass support. Sophisticated accommodations at Anthology Senior Living provide all the comfort of home, with the luxury of a 24-hour team.

Programming at Anthology Senior Living focuses on six dimensions of wellness: emotional, intellectual, environmental, physical, spiritual, and emotional. All six dimensions are interconnected, strengthening individuals and the community as a whole with a diverse array of daily activities to stimulate the mind, body, and spirit.

The quality of care provided at Anthology Senior Living of Louisville is extremely innovative and high-tech. Each resident has a customized care plan that is monitored by a compassionate care team. Team members at Anthology Senior Living are certified in CARES, a nationally renowned training program through the Alzheimer’s Association.

Anthology Senior Living of Louisville is located at 1105 Dorsey Lane Louisville, KY. For a limited time, lock in your rate through December 2021. Call 440-565-5473 or visit AnthologySeniorLiving.com/Louisville to schedule your tour today! To learn more about 106.9 Play’s Christmas Stories, visit www.1069PLAY.com.

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Abigail Hagerman, Dorislee Gilbert, Cassie Drochelman

Victim Advocacy Organization Turns 20 Writer / Angela Boggs Photography Provided

On December 6, 1993, Mary Byron celebrated her 21st birthday. She was murdered that evening by her abusive exboyfriend, who waited for her in a parking lot as she left work. She believed he was in jail for previously attacking her. Many thought Byron’s death was avoidable.

If she had known this dangerous man had posted bail, she could have taken precautions for her safety and survived that night.

On the one-year anniversary of her murder, the first automatic notification system for crime victims, called VINE (Victim Information and Notification Everyday)

was launched in Jefferson County. VINE is now used across the nation. It is a product of Appriss, a local company with global reach. For Byron’s parents, Pat and John Byron, as well as the creators of VINE and community leaders, VINE was a start but not enough. Seven years after Byron’s death, the Mary Byron Project was founded to help end intimate partner violence.

director of the Mary Byron Project.

The leaders of the organization honor Byron and her memory by working to end domestic partner violence.

Sadly, more than 25 years after Byron’s death, domestic abuse is still at a high level in the U.S.

“We want to do right by Mary,” Gilbert says.

“This is her legacy. Many people remember Mary and what happened, and there was a response from the community to work on positive changes. What really reached people and made them take action was how Mary’s former boyfriend was released, and she didn’t know. She felt safe and tried to go on with her life.”

“It is a real problem, happening to so many - 12 million victims each year, three in 10 women and one in 10 men negatively impacted,” says Dorislee Gilbert, executive

In the 20 years since it was created, the Mary Byron Project has given more than $1 million to fund solutions for addressing domestic partner violence nationwide.

16 / DECEMBER 2020

Past recipients include DV LEAP, the Battered Women’s Justice Project, Sojourner House, Providence House Domestic Violence Services, and the New York Legal Assistance Group’s Project Eden.

Gilbert, an attorney and veteran prosecutor, began as executive director in 2019 after Marcia Roth, founding director, retired.

Project leaders decided to focus on a statewide legal program to end intimate partner violence.

One way the Mary Byron Project helps is by representing survivors in court appeals related to intimate partner violence. An appeal allows a victim to ask other judges to look at a lower court’s decision to determine whether it is valid.

“Appeals can cost a lot and require specialized, technical knowledge,” Gilbert says. “Often students or legal aid represent victims in the original case, but the same resources are not available for appeals. The

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Mary Byron Project provides free, expert legal representation on appeal and impactful training for the legal community.“ The Mary Byron Scholars program at Assumption High School helps to raise awareness and counsel teens on how to educate classmates about dating violence.

Byron was a 1991 graduate of Assumption.

“My heart has always been in these cases,” Gilbert adds. “When the people hurting you are the people who are supposed to love you, it’s a lonely and frightening place to be.

Someone has to step in to say love doesn’t look like that.”

Regarding her journey to the Mary Byron Project, Gilbert says she initially spoke with Roth about participating.

“I looked at similar programs in D.C. and California,” she says. “I knew that I could be part of change for individual survivors and systemic change that would positively

influence all domestic violence cases.

As a prosecutor, I saw the frustration at how the system works, the difficulties in keeping victims safe, and the need for more understanding of intimate partner violence throughout the justice system. The Mary Byron Project is making positive change in these areas.”

This fall the organization is launching a virtual 20th anniversary event to celebrate accomplishments, raise awareness, and continue to bring positive change. As it has for many others, COVID-19 has brought challenges, but project leaders have continued to represent survivors in appeals and have held many trainings and events online.

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Former Director, Marcia Roth, presenting Roth Award to the Migrant Clinicians Network.

While Gilbert emphasizes that the justice system should be a place where those who have been victimized by intimate partners can turn for legal protection, she insists that our individual behaviors make a difference. She says the riskiest time for victims of intimate partner violence is when they try to leave the relationship, and she offers hope.

“When we as individuals listen to victims

Pay Byron, Mary’s mother, receiving the Community Service Award from the Kentucky Council on Crime and Delinquency.

Mary Byron

without judging how we think they should have reacted, and when we discourage gender-based stereotypes and biases that excuse and allow abuse to flourish, we make the world a safer place to survive and escape intimate partner violence,” Gilbert says.

the Louisville area domestic violence shelter, or the National Domestic Violence Hotline. The Center’s toll-free number is 1-844-237-2331, and its website is thecenteronline.org. The Hotline can be reached at 1-800-799-7233, and its website is thehotline.org.

Gilbert says victims who are currently experiencing abuse can obtain assistance from the Center for Women and Families,

For more information on the Mary Byron Project, visit marybyronproject.org, and call 502-992-3444.

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7 HELPFUL HOLIDAY SHOPPING TIPS

24 / DECEMBER 2020

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It always feels like the holiday season comes around and many people start looking for ways to save. Who doesn’t love to put money back in their pocket?

Every year it seems like we say we’ll buy less, and then budgets are blown as supershopping ensues. However, this year is a little different. Situations and plans are all changing at rapid speeds, so maybe it really is time to think about how less can be more.

Here are a few tips on how to enjoy the holidays with minimal stress, and without breaking the bank.

1. MAKE A LIST AND BUDGET Many people make a list of who they want to buy for and what they’d like to receive, so feel free to make a list and check it twice.

Not everyone operates according to a budget, but it’s not a bad idea to project how much you’ll spend on each person. This year, write it down. Make a budget and stick

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to it. Not only is this helpful for spreading the love evenly, but it’s also much better for your bank account. Once you are done shopping for certain things, check them off your list and record how much you spent.

2. PLAN TO BUY LESS As stated before, we often plan to buy fewer gifts than in previous years, but end up with more than enough presents to fit under the tree. Think outside the box. Some of the best gifts aren’t the biggest, but the most thoughtful. Stick to the philosophy of “Something to wear, something to read, something they want, and something they need,” and see how that goes. If you hate it, you can buy more next year.

3. SHOP EARLY Sometimes it’s hard to plan ahead in these crazy times of uncertainty, but this is one thing you should do if you can. When you shop early, it spreads out your expenses to make the process more bearable, and sometimes you can get amazing deals.

This can alleviate the stresses of lastminute shopping.

4. SHOP LOCAL There are many local shops that need us

this holiday season. Go directly to your favorite local retailer or visit a website like TruLocal.com, where you can shop online through your hometown favorites and pick up curbside. You can save on shipping, give back to your community, and find unique and fun gifts for your family.

cookies, or even hats and mittens if you knit.

Many people appreciate handmade items, and they come with a little extra love.

7. TRY SOMETHING NEW

Maybe this year is a little different, but that doesn’t mean it has to be less joyful. Maybe this is the year when you draw names as a 5. SHOP AROUND family, so that each family member doesn’t Do your research. Don’t jump the gun need to purchase as much as in past years. on buying something. Check out all the Perhaps you’ve considered giving gifts like places where you can find a certain item, memberships to museums or zoos - gifts and look for the best price. You can even that go beyond the holiday season. Maybe price-match at many stores these days. you’ve even thought about forgoing gifts Keep your smartphone handy to look up altogether, and instead plan to give to others prices on other sites quickly. The best things as a family. Encourage your little ones to get for your budget and bank account during in on this too. They can go around collecting the holidays are discounts and coupons. canned goods to donate to a soup kitchen, Also, check into cash-back programs like money for meals for hospital workers, or Rakuten. These can be easy ways to recoup a donations for a favorite charity. little cash if you are shopping online.

Whatever you do this holiday season, remember the reason for the season. It’s a 6. THINK HOMEMADE time to share in love and joy. Gifts are not Do you make a particular type of pie or all that matter, so don’t stress about those fudge that everyone loves? Homemade too much. While this year may look a little items, edible or not, can garner lots of love different, enjoy it. Sometimes the experiences and appreciation from others. Taking time we have that are different, and not quite what out of your life to make gifts is the perfect way to trim spending this year. There’s a lot we expected or hoped for, are the best and most memorable. Happy holidays. of inspiration online, but think ornaments,

26 / MIDDLETOWN MAGAZINE / DECEMBER 2020 / atMiddletown.com

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One of the worst things for a parent to imagine is being told that their child has a terminal illness. Two local families were given this news about their sons, both of whom have diffuse intrinsic pontine gliomas (DIPG), which are tumors located in the brain stem. While some brain cancers are treatable, DIPG has a two-year survival rate of 10%. According to the Michael Mosier Defeat DIPG Foundation, the median survival rate is nine months from the time of diagnosis.

David Turner Jr. and Kyler Buckner have had different DIPG experiences, but what they have in common are families that adore them, school communities that have rallied around them, and positive attitudes that would put the bravest adults to shame.

his head to one side, which she thought may have been related to David having torticollis as an infant. She took David to a pediatrician that afternoon, and was given instructions to watch him that night and bring him back the following morning if What You Need to Know About DIPG things still seemed unusual.

Renowned astronaut Neil Armstrong’s daughter Karen was diagnosed with DIPG in 1961, and according to Liz Turner, David’s mother, not much has changed regarding the protocols for the disease since that time. Radiation is the only tool proven to reduce symptoms, and it may shrink tumors. There is no cure.

Diagnosis It might seem that DIPG, or any cancer, would have common symptoms, but there is a wide variance in DIPG symptoms and progression. David Turner Jr. came home from school on April 16, 2018, when he was six years old, saying that he had hit his head.

Liz says he was acting silly and holding

The next morning David’s face seemed to droop on one side, so Liz took him back to the pediatrician. When the doctor checked David’s muscle tone by tapping his knee and elbow, his leg shot out and his fingers flared in a response that was dramatically different from anything Liz had seen before. She was told to take David to the emergency room.

At the hospital, David was taken in for an MRI while Liz waited with her mother and her husband, David Sr. Before the MRI was complete, the emergency room doctor told them there was a mass on David’s brain stem, and they needed to bring in an oncologist. When Liz called David’s school, Tully Elementary, to ask about when he hit his head, she was told that he hadn’t.

“Come to find out, he had had a headache,” Liz says. “His head hurt like he had hit his head.”

David was moved to the oncology floor so that doctors could determine whether they could do a biopsy, which would allow him to participate in clinical trials. Some neurosurgeons advised David Sr. and Liz not to do a biopsy since it wouldn’t change the ultimate outcome and could cause damage due to the location of the tumor. Other surgeons thought it was possible. Ultimately a doctor determined that he could do a biopsy, but it wouldn’t happen until he returned to the U.S. from an international conference.

Rather than sitting at the hospital since nothing could be done at that point, David’s parents took him to the Thunder Over Louisville event for the first time.

“At the end of the night he said, ‘Mommy, this was the best day ever - I want to come next year,’” Liz says. “So that became our theme.”

Since that time, the Turner family has tried

28 / MIDDLETOWN MAGAZINE / DECEMBER 2020 / atMiddletown.com

to do something to make each day the best day ever for David.

Kyler Buckner’s diagnosis was different. In September of 2019, he began complaining of headaches. His pediatrician noticed that his face was drooping, but his neurological tests suggested everything was fine. After the headaches stopped his personality began changing, as well as his balance.

“He became irritable and didn’t want to play with the other kids at Cub Scout camp,” his mother, Kristen Mackin, says.

Mackin took Kyler to the emergency room, thinking he may have had a stroke. A CT scan showed a mass and bleeding on his brain, and he was taken to a children’s hospital where an MRI was done. He was diagnosed with DIPG and hydrocephalus, which required a shunt to drain fluid.

“Basically, with DIPG they just tell you, ‘This is the end result. There’s nothing we can do,’” Mackin says. “They gave us a book

if I wanted to read it. I didn’t get past page two before I started crying uncontrollably and threw it to the side.”

Treatments Following his diagnosis, David was not able to participate in any clinical trials, but he has been able to undergo three radiation treatments and take high-dose steroids, which cause facial swelling and mood swings. His first six-week radiation treatment shrunk the tumor by 50%. He was also able to take some chemotherapy infusions at home, as a way to keep the tumor from growing as quickly.

A second round of radiation in the summer of 2019 worked well for David. However, in December of 2019, he experienced increased symptoms that worsened in late March of 2020, to the point that David was having trouble swallowing and breathing. He had a third round of radiation treatment in April of 2020 that improved

his symptoms again. As of late June, Liz says David has a significant foot drop, and wears a brace in order to walk. He is unable to use his right hand past his elbow.

Kyler has been traveling to San Francisco, California, every four to eight weeks to participate in a convection-enhanced delivery (CED) treatment trial, in which a chemotherapy drug goes through a catheter directly to his tumor.

“They drill a tiny hole into his skull and screw in a type of plastic cap,” Mackin says. “It takes them from 9 a.m. to 5 p.m. or later to do half the treatment. If he doesn’t show too much weakness, they do the second round.”

In late June of 2020, Kyler finished his third round of CED.

How Life Has Changed

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: S Y A D TUES with the symptoms of DIPG, David and Kyler’s families have had to make adjustments to life in many ways.

the little things that we used to worry about and that people get caught up in do not matter to us anymore,” she says.

Both families’ lives have been impacted economically. David Sr. stopped teaching after his son’s diagnosis, and Liz has had to take leaves of absence from her job at UPS. Mackin left her job as an office assistant in order to care for Kyler, whether he is in Louisville or California. Both mothers say their sons’ elementary schools, Tully and Farmer, have been supportive and organized fundraisers to help the families pay medical bills and do special activities with their sons.

The Turners strive to make David’s life enjoyable each day, especially when he has had to undergo radiation for 30 days in a row.

One of the biggest effects of DIPG for the families has been psychological. What you expect to do and be as a parent changes dramatically the moment you know your child will not live to see adulthood, Liz says.

“His diagnosis really changed everything -

Kyler’s stepdad, Brian McElroy, and Mackin try to keep Kyler’s life as normal as any other nine-year-old boy’s life might be.

Both boys have done Make-A-Wish trips, and David’s parents have taken spontaneous trips with him to Myrtle Beach, South Carolina. Liz’s brother, who works in federal law enforcement, has helped to schedule fire truck and police car rides for David. He has also been able to explore military cockpits and ride in a helicopter. Kyler, who has an older brother and younger sister, has been trying to have a normal summer before his next trip to California.

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“We just live and laugh and love, and spend time together,” Mackin says. “We do everything we can to make the most of every day that we have together without worrying.”

What Mackin keeps inside herself is challenging.

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