BRUSH PRAIRIE, Wash. — Tony Sermone, 10, of Brush Prairie, Washington has something called ADNP syndrome: a rare autism-related genetic disorder that affects brain development.
ADNP syndrome can cause problems with the neurological, cardiovascular, endocrine, immune, musculoskeletal and gastrointestinal systems, as well as vision, hearing, growth, feeding and sleep. Developmentally, it can cause mild to severe delays in intelligence, speech and global motor planning.
Back in 2014, Tony was the first child in the U.S. diagnosed with the syndrome. There are fewer than 200 worldwide.
Recently he and his family got to spend some time with a Seattle Seahawks player who wore specially designed cleats in a game to honor Tony.
Malik Turner took part in the NFL’s My Cause My Cleats initiative. He heard about Tony and ADNP Syndrome through an organization called Uplifting Athletes. He contacted the Sermone family and invited them to the Seahawks training facility and showed them the cleats.
“We thought it was so amazing,” said Tony’s mom, Sandra Sermone.
It’s helped spread the word about ADNP Syndrome. Sermone has set up a foundation looking to raise awareness and funds for research for a treatment.
You can learn more about ADNP Syndrome here.