While most children worry about passing math and spelling tests, many patients at Riley Hospital for Children have much harder lessons to learn. These ten children below show us what it means to fight for your life. With the marathon approaching in ten weeks, we look at ten children that inspire this organization.
10. Hope Parker
At 5 years old, she isn’t able to pronounce hypoplastic left heart syndrome, much less spell the words. Born with half of a working heart, Hope has come back from the brink of death several times, battling through 17 surgeries and a stroke. Today Hope’s parents work to enjoy every moment they have been given with their daughter, grateful for the many ways Riley Children’s Hospital has given them Hope.
9. Henry Allen-Dollard
He isn’t old enough for school, but he knows what it’s like to be one-in-a-million. In 2010, he was diagnosed with Barth’s syndrome, a genetic disorder so rare that it affects only 148 people worldwide. This disorder affects his blood cells and muscles, including his heart, putting him at risk for infection and heart disease. Luckily, his “best friend” Dr. Gzegory Nalepa of Riley Children’s Hospital recognized the rare disorder and has Henry under treatment so someday he can start school and make new friends that don’t work in a hospital.
8. Ashtyn Brown
Ashtyn attends college on a golf scholarship, but she knows all too well the challenges facing kids at Riley. She has fought acute lymphoblastic leukemia not once, but twice. Together with her firefighter dad, she spearheaded Ashtyn’s Fire Run, raising over $40,000 and launching the Dalmatian Foundation to help families of critically ill and injured children.
7. Sarah & Jodi Camino
It can be tough for any family to juggle the needs of one child with a serious or life-threatening disease, but “tough” multiplies when two children face challenges. For sisters Sarah and Jodi Camino, the experience has taught them to bond. Sarah was diagnosed with ankylosing spondylitis, a form of juvenile arthritis, while Jodi battles polycystic kidney disease. The girls see their experience as an opportunity. Both girls have taught their own classes about their diseases and worked with their school to support the Jingle Bell Run for the Arthritis Foundation. The sisters have also been actively involved in the Kids Caring and Sharing program, which supports Riley Hospital for Children.
6. Tyler Genneken
Before losing his battle with leukemia at age 14, Tyler Genneken transformed his challenges into opportunities to help others. One minute Tyler was enjoying his summer break from school with a Fourth of July vacation, and the next he was sent to the hospital, diagnosed with acute lymphocytic leukemia. When there was no match for a proposed bone marrow transplant, Tyler reached out to family and friends. Together they planned a bone marrow donor drive, not just to attempt to find a match for Tyler, but to help other children who were waiting for a chance at life. His goal was to sign up 500 new listings on the bone marrow donor registry. After speaking to a wide range of organizations, more than 1400 people joined the registry in a single day, giving hope to children for years to come.
5. Sheila Fraser
Sheila knows what it’s like to be sidelined by disease and watch life go by. At 11, her father took her to the doctor for what they thought was a sprain. Instead, the doctor diagnosed Sheila with osteosarcoma, a form of bone cancer and the third most common cancer for teens. Doctors were able to shrink and remove the tumor, leaving her leg intact. When the cancer returned in her lungs, Riley again was able to step in with life-saving treatment.
4. Jac’Quel Jones
While most children enjoy a day off from school, for Jac’Quel Jones, this is an all-too-often occurrence. Born with polycystic dysplasia kidney disease. Jac’Quel has endured more than 50 surgeries and weekly dialysis. But his disease isn’t what sets Jac’Quel apart. Instead, he uses his own inner creativity and humor to lighten the loads of all those around him. He brings laughter to the otherwise quiet dialysis clinic at Riley. In 2008, Jac’Quel drew a picture of Santa and was selected as a Riley Hospital holiday card artist. His artwork appeared on holiday cards and became part of the season’s greetings for families all across the state.
3. Anthony Majors
When Anthony Majors stood to play the drums at his brother’s graduation, he brought the crowd to its feet and tears to his mother’s eyes. Anthony was born with a variety of issues including leukopenia and neutropenia as well as misaligned legs. His prognosis at birth wasn’t positive, with doctors predicting he would have to live in a sterile environment. Treatment at Riley has included medication to correct his blood disorder and surgeries on both his legs and heart. All of his time at Riley has encouraged Anthony to plan for college and a future as a cardiologist.
2. Keona Shearer
Keona, whose name means “God’s Gracious Gift” in Hawaiian, isn’t even in school yet, but she has learned a lot about life. She lost her twin sister at three months. The next year, Keona started having problems. While the doctors at Riley did what they could to postpone the inevitable, Keona received a kidney transplant at the age of four from her father, Justin Shearer. Giving the gift of life to his daughter has inspired Shearer. As a donor, Shearer has dedicated his life to a healthy lifestyle as a nutritionist and personal trainer.
1. Dejon Walker
Dejon has learned self-expression is just as important as math and reading. It might also save his life. Dejon was born with a rare respiratory disorder called pulmonary lymphangiectasia. This disorder causes fluid to collect around the heart and lungs. While spending six months in the hospital as the fluid drained from his chest, Dejon was introduced to music therapy. Singing not only lifted his spirits, it also gave his lungs a much needed workout. As he grew more confident in his voice, Dejon started writing his own lyrics and even organizing karaoke parties at Riley.
With lessons of love, laughter and life, these heroes of Riley Children’s Hospital have something to teach us all.
By: Jeremy Schmitt