SCOTTSDALE, AZ — Beckett Hotchkiss, an 11-year-old boy, is bringing attention to a genetic disorder known as Marfan Syndrome. He's taken his push all the way to the capitol, with the hopes of better research and awareness. ABC15 is highlighting his story just days before the Marfan Foundation Walk on March 2.
"Marfan Syndrome is a genetic disorder that affects the body's connective tissue," said Beckett to a group of classmates at Mountainside Middle School. ABC15 caught up with him as he gave a presentation and a lesson on what his life is like living with Marfan. The Scottdale student has only been on this journey for five years.
"I was six when I first learned and I don't really remember anything," said Beckett. But his mom, Brandy, remembers when her son was diagnosed "When Beckett first got tested it was his eyes," said Brandy. "He had dislocated lenses and that was the first step in going through the process with him.
" She and her family went through the process of getting genetic testing, Brandy describing that time as "very scary". "You google it and life-threatening comes up and you're there with a six-year-old," said the Valley mom. Do you have a concern in your community or a news tip? We want to hear from you! Connect with us: share@abc15.
com Facebook | Instagram | YouTube Genetic testing confirmed Beckett's diagnosis. At 11, he's already had multiple surgeries and is now monitored by doctors at Phoenix Children's. "I have an enlarged aortic root," said Beckett .
