'Hood Inspired: Riley Wells
Apr 22, 2019 02:38PM
● By The Hood Magazine
By: Jessica Brovold
Looking at eight-year-old Riley, you see a little boy with a big smile and a love for life. As you look closer and spend time with Riley, you quickly realize the potential challenges he may face and his strong parents doing everything they can to make his life the best it can be.
Riley was diagnosed with CHARGE Syndrome shortly after birth. It is a genetic disorder, a complex syndrome involving extensive medical and physical disabilities that can vary from child to child.
Due to the CHARGE syndrome, Riley has right facial palsy, short stature, heart murmur, and he’s profoundly deaf.
His parents were unsure of what to expect in life for a child who was not only deaf but also has Charge.
“We were scared because we didn’t know what charge syndrome was,” said Amanda. “We just took it day by day and tried to connect with other families through the internet.”
When Riley was born, the family lived in a small community in Needles, California. They moved to South Dakota to be closer to family three years ago and Amanda says it’s been one of the best decisions they’ve ever made.
“As soon as we moved, we had so many people that helped in so many ways,” said Amanda. “We’re connected with deaf families and the deaf community. We took classes 1-2 nights a week. I’m still taking classes and we have deaf mentors for Riley.”
Riley attends Liberty Elementary School in Harrisburg. He’s in second grade and he’s thriving. He does regular therapies at LifeScape.
“The kids accepted him from day one,” said Amanda. “He can be a class clown and he’s quite popular. He knows a lot of kids and they are all willing and wanting to learn sign language so they can communicate with him and play with him.”
He’s also involved in several extra-curricular activities. From ninja gymnastics to cub scouts and baseball, like most kids his age, he keeps his parents on the move. While the family continues to learn to help him live his best life, Amanda has this advice for other parents who might be facing an uncertain medical diagnosis.
“Try to get as much information as you can and get in contact with communities to get connected with your child right away,” said Amanda. “It’s not always easy. I am not currently fluent in American Sign Language, so there are days it’s hard to get out what I want to say. I take a deep breath, step back, get my books out, I reach out to people who can help me.”