January 2023 Special Needs Living Akron/Canton

A Young Man That is Truly One in a Million!

An inspiration who goes by the name of Elliot Smith

WRITTEN BY ANDREA HURR PHOTO BY JULIAN CURET

After Elliott was born 4 years ago prematurely due to his mom’s preeclampsia, he spent 23 days in the NICU, where it was discovered that he tested positive for PKU on his newborn screen. PKU is a rare and incurable birth defect that causes an amino acid called Phenylalanine to build up in the body, which is toxic and, if not treated, can cause intellectual and developmental disabilities. The chances of your child receiving this diagnosis are less than 1 in a million! Fortunately, they found out Elliott had a mild case and didn’t need medications or a specialty formula.

The Smiths continued to have appointments with geneticists and some further genetic testing. They found that Elliott had 2 mutations of “uncertain significance” on his DNAJC12 gene and had multiple other tests done to determine the best course of action for Elliott. They also discovered that during a BH4 loading test, Elliott was one that responded exceedingly well to the medication they gave him during that test, which meant he would continue to respond well to it, so the medication was started then.

They had appointments with neurology and also found out that he had low levels of serotonin and dopamine in his cerebral spinal fluid, so he was started on medications for that as well. Elliott’s mom Amanda says, “Though we know very little about the implications of his diagnosis, we do know early intervention can help tremendously, and so we started him with everything available to us.”

They have yet to meet anyone else that has the same diagnosis as Elliott, but they don’t let that stop them or discourage them. Amanda says that they take advantage of many services for him: Help me Grow, Triple P Program through the Family Child Learning Center, and all the extra therapies they can get, such as OT, PT, speech and feeding. On top of all of this, Elliott was also diagnosed with Autism at age 2. The biggest struggle for Amanda and Elliott is that he looks like every other child, and when people can’t see that a child is “different,” they expect them to behave as other kids their age do.

Amanda would like other parents of children who have an “invisible illness” to know that they are still seen and still heard. “We’ve been given these children because we are the right people to fight for them,” she says. “No matter what obstacles come, special needs parents are resilient in fighting the battles that need to be won, and I am proud to be a part of such an amazing community.”

Currently, Elliott is attending a developmental preschool program at Greenwood Early Learning Center in Green. He loves water and swimming, so they have him in swim lessons so he can understand water safety and his parents can enjoy it with him without as much fear. They love seeing how happy and excited he is every time he gets in the water and hope that swimming will be a long-term hobby for him. He also wants to be Spider-Man when he grows up.

Receiving diagnoses like Elliott’s could really get you down, but the Smiths have found ways to stay positive, and hopefully, other people feeling discouraged can find encouragement in Elliott’s story. Amanda says, “Elliott himself is an inspiration to me. He endures a lot and can’t always understand the why of things happening, but he stays a happy and smiling boy through so much of it and constantly has his providers laughing from his silly and good-natured personality.”