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Help, Understanding & Group Support

HEART TO HEART Volume 2

Fall 2015

One in Ten Thousand

The Kozuma Family

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asey and Stephanie Kozuma and their three children Stephen (6), Daniel (4), and Grace (2) are a new addition to the HUGS ‘ohana. When little Grace was just 13 months old, she was diagnosed with Progressive Infantile Scoliosis (PIS). Like adult scoliosis, PIS is a lateral spine deviation. According to research, 74-94% of cases resolve on their own, but others can progress into a severe and disabling condition. Parent’s Intuition One day, Stephanie noticed a hump on Grace’s back. Stephanie knew immediately something wasn’t right. Soon after discovering the unusual hump, the Kozumas were referred to Shriner’s Hospital for Children in Honolulu. They were shocked by Grace’s condition. After all, the chances of her being diagnosed with PIS were one out of ten thousand. The x-rays showed that her spine was at a 43 degree curve, compared to a healthy spine

at zero degrees. Being that Grace’s condition is so rare, they were unable to treat her in Hawaii. Shriner’s Hospital in Honolulu referred the Kozumas to Shriner’s Intermountain Hospital in Salt Lake City, Utah for Elongation Derotation Flexion (EDF) casting treatment to help manipulate Grace’s spine. For the next two years, Grace would have to fly to Salt Lake City every four to eight weeks for treatment. Flying back and forth to Utah began to take a toll on their family life. Not only were they beginning to struggle financially, but also emotionally. Grace’s brothers, Stephen and Daniel, had to stay with their grandparents while Casey and Stephanie flew with Grace to Utah. Grace goes into isolation Grace needs to be strong and healthy for her treatment so it is crucial that she doesn’t get sick. For two weeks before every trip, Grace goes into “isolation” away from her brothers. “They gave her good night kisses through the glass door,” said Casey when talking about the struggle of having to separate his children. Between isolation and flying back and forth to the mainland for treatment, the family missed out on birthday parties, beach days, play dates, and most of all, valuable family time. Missing these treasured events affected the boys the most.

After almost a year of treatment, Grace has transitioned from the casting treatment to now bracing. Her spine has overcorrected itself fifteen degrees and she is well on her way to being like any other active two-year-old. Although Grace isn’t totally out of the woods yet, they feel confident that her condition will resolve on its own. Much needed support from HUGS The Kozumas have learned many lessons from this experience. One is to spend as much time together as a family. Another is to appreciate health. They want their children to live long happy and healthy lives.

Wonder Woman Grace

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Help, Understanding & Group Support

For Hawaii’s Seriously Ill Children and their Families HONORARY TRUSTEES June Jones Barbara Marumoto BOARD OF DIRECTORS Patrick Klein President Jason Higa Past President Christine Daleiden President-Elect Wenli Lin Vice President Charles Loomis Vice President JoAnn Lumsden Vice President Bill Tobin Vice President Franklin Tokioka II Treasurer Catha Combs Secretary Darrick J. M. Ching Calvert Chipchase Joel Emperador Rojo Herrera, Jr. Elizabeth Ignacio, M.D. Anne Lee Iris Matsumoto Carri Morgan Terri Okada Sonja Swenson Rogers

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s the Executive Director of HUGS and as a parent of two daughters myself, I feel a strong connection to the stories, struggles and triumphs of our HUGS families. There is so much support we can offer families struggling with a child’s illness. Our HUGS ‘ohana teach us every day what it means to be truly selfless, courageous and strong. I’d love to share a story with you of five year old Jeremy, who is suffering from liver malfunction. Jeremy frequently has to go into the hospital for treatments and may soon require a liver transplant. His mom had to quit her job in order to care for Jeremy and the family of five now has to rely upon Dad’s wages as a construction worker. His family loves hospital visits from HUGS and participates in family dinners when they can. His brother and sister have lots of fun and attention at HUGS respite programs and participate in HUGS other programs for siblings. Mom and Dad participate in Mom’s and Dad’s nights when they can, so they can have much needed time for themselves. They have relied on food from the HUGS Kokua Cupboard for a few rocky months to help get by. The stresses of everyday life, compounded by the ongoing anxiety of Jeremy’s medical condition, has felt unsurmountable at times for this family. Through HUGS, they have an important network of other families with similar situations to whom they can reach out when needed. HUGS has been there to support them along the way. Although their burden is great, we hope we have been able to lighten their load, at least a little, in such trying times. For families such as Jeremy’s, HUGS provides an array of programs that meet the emotional and financial needs as they go through their journey of serious childhood illness. We can help Hawaii’s families such as Jeremy’s only through the generous contributions from people like you. We ask you find a few extra dollars and contribute them to HUGS in the enclosed envelope so that Jeremy and his family can stay strong with your support. Thank you for joining the community of support for HUGS’ children and their families.

Aloha,

Mahalo,

Joan Naguwa, HUGS Executive Director

MEDICAL ADVISORS Desiree Medeiros, M.D. Darryl Glaser, M.D. Howard Klemmer, M.D. Joan Naguwa Executive Director 3636 Kilauea Avenue Honolulu, HI 96816-2318 Tel: (808) 732-4846 Fax: (808) 732-4881 Email: HUGS@hugslove.org Website: www.hugslove.org

AUW Designation #96590 CFC Designation #84333

ONE IN TEN THOUSAND Continued from page 1 “We are so grateful for HUGS. Everyone is so happy and loving” Stephanie says. They enjoy sending their children to Respite and attending Family Dinners. The kids can’t wait to come back to HUGS. Because it was imperative Grace stay strong and healthy for her treatments, they rarely took her anywhere before HUGS. Now that HUGS is part of their lives she comes to HUGS events and gets the socialization that she’s been missing. The Kozumas have been through a lot

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as a family. Stephanie reflects back on the past year and has these words of advice to all who are going through a medical ordeal with their children. “Be an advocate for your child,” Stephanie says, “Do a lot of research on your own about treatment, do whatever it takes, go where ever you need to go.” They are very thankful for HUGS and also hope to give back to HUGS one day. Maybe their eldest son, Stephen will become a “buddy” at HUGS Respite in the future.

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Uniquely You, HUGS 2015 SibCamp

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he 4th Annual HUGS SibCamp was held in June at YMCA Camp H.R. Erdman, located on the beautiful North Shore of O‘ahu. Nestled between the Wai‘anae Mountains and pristine beaches of Mokule‘ia, Camp Erdman provides the perfect camp setting for HUGS keiki. SibCamp is a 3 day camp designed exclusively for the siblings of HUGS children. This camp provides them with a supportive environment to bond and get to know other children who are struggling with similar situations, and express their emotions about being a sibling of a seriously ill child. This year, the camp theme was “Uniquely You,” encouraging the kids to be proud of who they are and confident in all they have to offer. In addition to fun activities such as archery, an alpine tower, and climbing wall, the kids engaged in activities that showed the true value of being “Uniquely You.” “We had the kids create ‘selfies’ in which they traced each other on paper, then colored in and designed their selfie to reflect who they are. Sometimes, we find that our siblings can feel left behind or unimportant in the face of their family struggling with a major medical crisis. They tend to hide their emotions, so as not to upset their parents and sibling. This activity allowed the kids to show us how they truly feel inside and to allow them the freedom of feeling whatever they want to feel, good and bad! I think it really made

them feel empowered to share without feeling the pressure of disappointing anyone. ”said Marty Oliphant, HUGS Director of Programs. Additionally, campers created their own unique strand of “SibCamp beads.” These beads are designed to resemble the Beads of Courage program at the hospitals. Colorful beads are given to children receiving medical treatment to tell their story and serve as meaningful symbols of courage that commemorate milestones they have achieved

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along their treatment path. Our sibling campers received beads for every activity they mastered, such as an archery bead, swimming bead, campfire bead, and much more. By the end of camp, each child had their own strand of beads to represent their journey at SibCamp. HUGS hopes the campers enjoyed the experience just as the staff and volunteers did, and they hope to see more siblings taking part in next year’s camp. “I had the privilege of volunteering for this year’s HUGS SibCamp. I could go on and on about the these amazing children. They possessed a maturity and intelligence far beyond their years. These children were the most wonderful and most adorable I’ve been around in a LONG time! Giving of your time to those who may need you is better than any seminar, detox or retreat program when you’re feeling low! Thank you for allowing me to volunteer at this amazing camp for siblings!” said Marlon, Camp Counselor. If you would like to “adopt a camper” or find other ways to support Sib Camp 2016 contact Joan Naguwa, Executive Director at 808-380-6925.

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Christmas InJuly O

n Saturday, July 25, Wet‘n’Wild Hawaii hosted a very special Christmas in July Event for HUGS. Thirtyfive (35) HUGS families, nearly 130 people, enjoyed a free day of fun in the sun at the water park in Kapolei. Thanks to Wet‘n’Wild Hawaii, the families received free admission, a pizza party hosted by Papa John’s Hawaii, and a special appearance from Surfin’ Santa. Surfin’ Santa cruised in on his short board with a bag full of gifts for the HUGS keiki, donated by Wet‘n’Wild. “We collected more than 60 individual toys during the holidays and are excited to gift them to the HUGS families on one of our longest days of the year with extended Twilight hours until 9 p.m here at the water park.” says Wet‘n’Wild Hawaii Marketing Director, Eddie Galdones. “We are currently celebrating 16 years in business, which is a testament to the consistent fun factor we strive to provide here at the park. We also recently opened up our first new ride in six years, The Waimea Whirl, so hopefully the kids enjoyed this new thrill as well.” “HUGS is so grateful for the opportunity to take part in Wet‘n’Wild’s Christmas in July.” said HUGS Executive Director, Joan Naguwa. “Our HUGS families had a wonderful time! Wet‘n’Wild created a fun day for the entire family and for that we are so thankful. Sometimes, when coping with serious illness, it’s hard to take time to do normal family friendly activities. Wet‘n’Wild allowed our families to do that without the worries associated with cost. We’d like to thank everyone who made this memorable day possible.”

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A SPECIAL MAHALO! Wish List Items HUGS House: Clorox Wipes Paper Cups Computer Speakers Post it notes Vacuum Cleaner Handyman Services Family Events: Paper plates Ziploc Bags Paper towels Eco friendly reusable totes Holiday sticker (To & From) Tags Laughter Wagon: Play –Doh Amazon Gift Cards Target Gift Cards Consolidated Theaters/Regal Theaters Gift Cards Safeway Gift Cards Wal Mart Gift Cards Visa Gift Cards

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UGS would like to give a special Mahalo to Zippy’s for conducting its “Have a Heart for HUGS” Campaign from June 1-July 31, 2015. The campaign ran statewide, with each and every Zippy’s restaurant location participating. “Upon entering the Ewa store, all you could see were HUGS hearts! They covered the walls, counter, and even the cash registers. We feel so honored that our community is so supportive of HUGS.” Said HUGS executive director Joan Naguwa. Thousands of pink HUGS hearts were sold in Zippy’s restaurants across the state for $1.00 each. HUGS also received 25 cents for every Kokua Pac (Star Edition) sold! These generous donations will go directly to HUGS to meet the emotional and financial needs of Hawaii’s seriously ill children and their families free of charge. “The Zippy’s staff have been incredibly supportive of our organization for many years and for that we just can’t thank them enough! The Zippy’s staff and customers know the true meaning of the word ‘Kokua.” Said Joan Naguwa, executive director.

oin us for a special HUGS FUNdraiser at California Pizza Kitchen at Kahala Mall on Wednesday, September 30, 2015. CPK will donate 20% of each order to HUGS when a valid FUNdraiser flyer is presented (see insert). This flyer applies to dine in, take out, catering and curbside orders.

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20% will be donated only for orders that present a hard-copy flyer, so please help us spread the word by printing out copies below and sharing them with your friends, family and co-workers! *Note: offer is void if distributed on or near CPK grounds. Thank you for helping to raise funds to support Hawaii’s seriously ill children and their families.

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Celebration of Life

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n Saturday, August 15, HUGS families came together at Sunset Ranch for it’s Celebration of Life event to honor those children who have passed away. This year, each family created a special name tag with each child’s name or memory. They tied the tag to a koa tree seedling, which was generously donated by Sunset Ranch. The seedlings were planted on a ridge overlooking Sunset Ranch and Waimea Valley. Families are encouraged to come back to visit and watch their koa tree flourish and grow strong.

Each of these families also decorated a candle holder that held a candle burning brightly for each child we have lost. In addition, HUGS families flew hand-made kites, met four-legged friends at a petting zoo, and worked on other crafts during this day of love and remembrance. “HUGS’ annual Celebration of Life event is a very special day in which our families come together to support one another.”said Joan Naguwa, HUGS Executive Director. “We extend our heartfelt thank you to our many partners and sponsors, including Locations Foundation

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and Sunset Ranch, for their generous contributions in making this event so special.” Thanks to Locations Foundation, its volunteers and Sunset Ranch, HUGS families were able to celebrate the lives of the children in a beautiful setting surrounded by love and support. The families received an opportunity not only to quietly reflect and remember but also to participate in peer support activities to provide comfort with each other.


15 Dos and Don’ts for Helping a Friend With a Child in the Hospital Dr. Karin L. Smithson Author, Therapist, Motivational Speaker. Brave Mom of three. Co-Founder, TheFatherlessDaughterProject.com — DoctorKarin.com This article originally appeared in the Huffington Post Healthy Living Edition on August 4, 2015. 1. DON’T stop calling because you feel like you’re bothering them. DO check in and let them know you are here. We pull back because we “don’t want to bother” someone who is struggling. Let me debunk that myth: Your friend needs to hear from you. If you stop connecting, that communicates that their situation is unimportant. They will remember. 2. DON’T forget the diagnosis. DO ask questions, remember the major issues and look them up. Ask for the spelling of the diagnosis and care enough to be informed. You don’t have to speak the medical language, but by understanding their child’s issues, you will give a tremendous gift. And if you have questions — ask. That shows you care. 3. DON’T forget a major surgery or test. DO mark your calendar and send a message of support. Someone remembering means the world. They will be blessed by your words, even if they don’t have time to respond. This is especially true as they sit in the O.R. waiting room... waiting... 4. DON’T ignore them because you are scared they might cry. DO have the courage to check in, even if it means you might hear emotion on the other end. Our culture is afraid of tears. Please don’t be. Just say, “I am so sorry that you are going through this. I care about you and your little one so much. I am here.” Then be there. 5. DON’T forget that they are in the hospital when you are celebrating holidays. DO recognize that they need love on special days. While they don’t want you to miss time with your family, they would treasure being remembered by a phone call, handmade card or video chat with everyone standing around a sign that says “We love you!” 6. DON’T believe that they “really don’t need anything.” DO drop off a meal, clean or offer to take their kids. And you can always, always give the gift of prayer.

The majority of people have a very hard time asking for what they need, and knowing that they have food, a clean house or prayers lifted can get them through the day.

7. DON’T overstay your welcome by insisting on a sit-down visit. DO bring food or supplies over, understanding that they don’t have the energy to entertain you, unless they are clear that they need to talk. Then stay, help and listen. Their schedule revolves around the hospital, family, sleeping and meals, so stay aware that they have a lot to get done while they are home. If your friend insists that having you there is comforting, stay and help. 8. DON’T get your feelings hurt if they cannot answer the phone. DO know that they need to reserve their energy. Understand that this does not reflect how much they love you. They are just doing their best to stay afloat on very little sleep and zero free time. 9. DON’T forget to respond to emails/texts/posts. DO send a response to their messages saying something supportive. They are checking, because they need it. While they may not have the time for oneon-one conversations, they will find great comfort in the middle of the night as they lie awake in the hospital checking messages — reminding them that they are not alone (because they feel like it). 10. DON’T simplify or dismiss their child’s medical condition by saying, “Everything happens for a reason.” Please. DO validate the seriousness of the illness by confirming that they are facing something very difficult. Speak words of care and hope. Talk about the preciousness of the child and your love for them. Don’t dismiss the crisis. Say, “I am heartbroken you and your baby are going through this. Hang in there and know there are so many people who care about you.”

Do not try to trump their story with one of your own. If you can relate, offer to walk alongside them.

12. DON’T tell them all of the details of your week at the beach while they are in the hospital. DO encourage them to do something “normal” if their child stabilizes. Offer childcare or a group date when they need it. Remember, they haven’t felt “normal” for a while — and they miss it. 13. DON’T show up with junk food. DO care enough about them to bring healthy munchies. DO take a stroll around the hospital with them. Since their self-care is suffering, healthy food and movement will help their bodies. Bring homemade vegetables, a tray of sandwiches or cut-up fruit. Help them air out their tired souls with a walk in the hospital’s garden. 14. DON’T forget to wash your hands or to stay away if you are sick. DO wash your hands when you walk in the room, and only walk in with perfect health. Understand that a virus on your hands can mean a catastrophic infection for their child. 15. DON’T forget to ask the parents how they are doing. DO ask “How are you?” Then wait for the truth after they say, “I’m fine.” People often forget to check in on the parents. They are struggling with exhaustion, confusion and fear. Be there for them by being present to their struggle. Just listen — they know you cannot fix things. They just need love.

11. DON’T act like you can relate to the seriousness of the medical complication unless you have been through the same thing. DO acknowledge that you are trying to understand it.

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NonProfit Organization U.S. Postage

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Help, Understanding & Group Support

Honolulu, HI Permit No. 9613

3636 Kilauea Avenue • Honolulu, HI 96816

“HUGS is truly one of a kind...the support they offer to families is endless” — Kelsie, HUGS Intern

HUGS DESIGNATION #96590

For military personnel and federal civilian employees HUGS DESIGNATION #84333

HUGS DESIGNATION # 77433

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