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.
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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 during his presentation. "I take heart medicine every night to help me."
"We definitely need more awareness and better knowledge," said Dr. George Wang with the Mayor Clinic.
Dr. Wang and Dr. Fadi Shamoun are two cardiologists who work with a team that treats patients at the Mayo Clinic in the Valley.
Both doctors said they frequently meet people who had no idea this gene ran in their family.
"All the time," said Dr. Wang. "And they may recognize some of the features, some of the hallmark features."
Those physical features include long arms, legs and fingers. Patients can also have a chest that sinks in or sticks out and flexible joints. But some signs aren't so easily spotted.
"The aorta, which is the largest artery in the body and the largest vessel, and an area that's commonly effected in Marfan Syndrome," said Dr. Wang. "You can't tell on physical exam and often a majority of the time they have no symptoms, such as chest pain or discomfort, all the while its enlarging inside their body."
Both doctors told ABC15 that's why monitoring patients is essential.
"Monitoring does help us recognize when the risk of dissection or a tear is elevated and take proper steps to repair it before it gets to the point," said Dr. Shamoun.
There are some medicines and preventative surgery to help manage Marfan Syndrome, but both doctors hope more research will bring great treatment options.
"Hopefully the future will have better diagnostic tools, better monitoring tools; where we aren't just measuring the size of the aorta but were measuring the stress of the aorta and better therapeutics," said Dr. Shamoun.
Beckett admits his diagnosis can be scary sometimes. While one in every 5,000 people will be impacted by Marfan, according to the Marfan Foundation, this young Valley student's story is a little rarer.
He didn't inherit Marfan from his parents, they are both negative. Instead, his case is considered spontaneous.
When Beckett was diagnosed, he and his family turned to the Marfan Foundation for community.
"I think that is a decision that we made is to be loud and proud about it, and we are thankful Beckett is so great and he does the presentations in his class," said Brandy.
For the third year in a row, the middle schooler has gotten a proclamation from Governor Katie Hobbs, making February Marfan Syndrome Awareness Month in Arizona.
On March 2, Beckett will be leading a team at the foundation's Walk for Victory. ABC15's Ashley Holden will also be walking with her own team.
Her dad, Dave Holden, was 61 years old when he passed away in 2022 from an aortic dissection. Known by his family as "Big Dave", he was never diagnosed while alive. Over a decade before his death, he suffered a tear but survived.
After his passing, members of the Holden family underwent genetic testing and learned that Ashley's brother also has Marfan. She's sharing this story with his permission with the hopes of spreading awareness.
"Big Dave's" passion as a life-long coach was to help others, something that also bonds the Hotchkiss and Holden families.
The Marfan Foundation's Walk for Victory is March 2 from 12 to 3 p.m. at Chappal Park. Anyone can join a team, walk, donate, or learn more about the genetic disorder on the foundation's website.
