Meet Dontrell – Indiana

Four-year old Dontrell loves music. He enjoys Baby Shark, Bubble guppies, just things with music he can clap and dance to. Dontrell has an older brother and sister, Derek and Zoe, and a baby brother Zion.

Dontrell was diagnosed with Tuberous Sclerosis Complex and seizures at 2 months old after his mother Angelica noticed him shaking. Tuberous Sclerosis Complex is a rare genetic disease that causes non-cancerous tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs and skin. He was diagnosed with TSC II following a genetic panel that analyzed his DNA and that of his parents.

Dontrell’s seizures were difficult to control at first, as he wasn’t responding well to medication; strangely, he only had seizures when he was sick. Angelica theorizes that their former home could have made Dontrell develop respiratory issues, which resulted in him having up to 20 seizures a day. “At one point, he was in the hospital every week— this was at the end of 2020”.

Dontrell’s neurologist told Angelica that she had done everything she could think of to help them, so she referred Dontrell and Angelica to the TSC clinic in Cincinnati where they began more testing. Unfortunately, in one of Dontrell’s stays there, Angelica believes that Dontrell developed scarring in his airway from a ventilator, as he later had trouble breathing normally. As a result, Dontrell took an ambulance ride to the Cincinnati hospital, which determined he had scarring that was causing his airway to close.

About three weeks were spent in Cincinnati addressing his airway before the ongoing seizures could even be addressed. Once it was, testing determined that he was eligible for brain surgery. Angelica was told that Dontrell had dysplasia that meshed with his motor cortex. However, the doctors didn’t want to take away his motor skills and mobility, and didn’t want to entirely remove the issue, meaning he could still continue having seizures.

Dontrell had surgery scheduled for March of 2021, in which his left front lobe was removed. Some of the dysplasia had to be left behind, and Dontrell is still on seizure medication, but he has only had one seizure in 2022 so far. As for TSC, Dontrell thankfully never had tumors, only dysplasia, where the left side of his brain didn’t form correctly.

“It’s been tough for his siblings and for me”, Angelica said. Dontrell is nonverbal, he is globally delayed, and isn’t potty trained. Despite Dontrell’s long and difficult journey, Angelica has persevered and maintains a positive attitude about the present and future: “it is definitely hard, but if you keep your faith in God in the center of everything, you can get through it. Watching my baby have seizures and feeling helpless and not being able to help him is probably the hardest thing I’ve ever had to go through, but because I always kept my faith, I knew that God wouldn’t put anything on me I couldn’t handle, and I always feel like it’s gonna get better, no matter what. I think that’s what got me through the whole ordeal and made me able to support my other kids as well while we were going through this.”

Angelica learned about A Kid Again through Zion’s grandmother. Angelica’s family hasn’t been able to attend any events yet, as she is kept busy by caring for her four children as well as a niece and nephew, and Dontrell is easily overwhelmed by large amounts of noise and activity. However, Angelica says that “just reading other people’s stories, knowing that I’m not alone and that other people are going through challenging times, and just having a platform that we all feel included on has been very helpful.”

December 2022