Aiden, 5, loves music. When he was two years old, Aiden began drumming on the kitchen table. Today, Aiden plays three different djembe drums for up to an hour every day—and is even learning to play the piano. Self taught, Aiden learns everything he knows from watching videos on YouTube. Watch him in action below:
Being born with Nager syndrome, Aiden’s experience of his world includes major hearing loss, no thumbs, a cleft palate, and a shortened soft palate. All of which is irrelevant to his musical genius and accomplishments. Aiden is thriving and improving every day—and remember, he’s only five!
His parents, Chrissy and Juan, are his biggest fans.
Thankful for Aiden’s Trach
In Aiden’s five years, he has undergone thirteen surgeries, including three surgeries to fuse his pointer fingers into thumbs and one surgery to provide him with a tracheostomy (artificial airway) when he was only five days old.
Aiden’s parents say they feel blessed he has a trach. “It’s saving his life,” Juan explains.
This “Little Man,” as Aiden’s family lovingly calls him, is not letting his trach (or anything else) get in his way.
Learning with the BAHA Hearing Aid
Extremely bright and already reading, Aiden’s hearing loss has made it difficult for him to focus at school. His hearing is muffled, similar to hearing underwater. Traditional hearing aids don’t work for Aiden due to his congenital ear defects.
Last week, Aiden received his new BAHA hearing system (the light blue headband he wears). The bone anchored hearing aid (BAHA) allows Aiden to hear by transmitting sound waves through the bones in his skull that are then converted to neural signals and perceived as sound.
In only five short days, Aiden was more engaged at school—and happier! His teachers and nurses can’t believe the difference it has made.
Nager Syndrome Community
Chrissy spent the first 35 years of her life thinking she suffered from Treacher Collins syndrome. When Aiden was born, she learned the truth—she actually had a mild version of Nager syndrome.
“Before I had Aiden, I hardly ever talked about my syndrome.” Chrissy continues, “I tried to hide it.”
Now, Chrissy is her son’s biggest advocate and is very connected to the small, but mighty, Nager syndrome community. It’s where they learned about the BAHA hearing device.
“We know children who suffer from Nagers all over the world—Poland and New Zealand, to name a few,” Chrissy explains.
“Most of all, we feel lucky,” Juan says. “Our nurses have become almost a part of our family. They really care about Aiden—and it shows.”
Independence Plus also feels lucky and enriched by being a part of Aiden’s life. His brilliance helps us keep perspective on the challenges in our own lives—even if some of us only know him through this story. How have you been inspired to bring out your best self regardless of the challenges you may face?