Joel was a happy, healthy baby, born full term at nearly eight pounds and thriving. But in what seemed like an instant, everything changed. Instead of thinking about what their baby may be when he grows up, they were praying he’d live to see his birthday.
Joel began having seizures. At 11 months, he couldn’t swallow and had to have a feeding tube. The surgery that typically doesn’t take long took five hours.
“The surgeon came out and told us Joel had coded but was stable,” his mom, Deanna said. “From that moment on, I realized how blessed I was to still have my baby, and I would cherish every single moment I would get.”
A debilitating diagnosis zaps his energy, but not his spirit
Joel was diagnosed with Mitochondrial Disorder Complex. Only 10 percent of children diagnosed with the disease live more than nine years. Mitochondria are the body’s power plant and give us energy. When the mitochondria don’t work correctly, cells don’t get the energy they need. Despite the disease, Joel continued to gain strength. By the time he was six years old, he had learned to sit up, roll over and say a few words. He could even walk with help. There always seemed to be a smile on his face.
“Joel had a special way about him,” his mother said. “He was so calm and peaceful, even in the worst of pain and toughest of life.”
He also was beating the odds. His mother became his full-time caregiver. She navigated working at their family-owned business in Morgantown while caring for her son, and later, his four brothers and sisters.
Care management provides continuous support
The family was referred to CICOA when Joel was three years old. CICOA helped arrange medical care for Joel and the equipment he needed, including a wheelchair. CICOA serves more than 400 medically fragile children, along with their families.
“I always felt like CICOA gave their all to make sure we were getting everything Joel needed and more,” Deanna said.
“I am so glad that the nurses stepped up and let me know they were caring for Joel, and that I didn’t have to worry about that part. It’s a huge thing to trust someone with your child, especially one that can’t speak for himself or tell you when something goes wrong.”
Being a parent of a child with special needs is not easy
“It became our life, and I learned to enjoy it,” Deanna said. “Joel was easy to care for, and I am so thankful for that. He was easy to please, and he loved just being where I was or with the rest of the family.”
Joel outlived the prognosis. He attended school, including Franklin Central High School when his health allowed. In August 2019 his condition worsened, and he was hospitalized for nearly two months—his longest stay. He passed away in November.
“He taught me so much,” Deanna said. “To take life one day at a time and make the best of it. He loved music, kids, animals and his family. He definitely was a momma’s boy. When I would walk in the room, he knew exactly where I was and watched me! His brothers and sisters would read him books and he soaked up all of that love!”
His family soaked up the love he gave for almost 18 years.
“Every single memory of Joel and his life brings me joy,” his mom said. “I feel like we were blessed with many extra years, and I am so thankful for that! I always hoped he would outlive all that the doctors kept telling me, but you really don’t ever know until you live through it.”
Be there for families like Joel’s who are caring for children with special needs. If you know a family who could benefit from CICOA’s services, please refer them to our website or the Aging & Disability Resource Center at (317) 803-6131.