A North Branford mom, and her two kids, are raising awareness about what it’s like to grow-up with a disability. Both Sam and Alex Bode have Friedreich’s Ataxia which causes progressive damage to the nervous system.
“For eight years – 7 years and 10 months, they were just like everybody else,” said Mary Caruso, explaining that her two children were active, riding bikes and playing with friends. “I started noticing subtle things like going through a doorway was difficult…walking straight was difficult. Sam’s gait was starting to go off.”
After being diagnosed with Friedreich’s Ataxia, their bodies have slowly deteriorated. They lost their ability to walk and their vision is failing.
As a founder of FARA, the Friedreich’s Ataxia Research Alliance, Caruso had advocated with tenacity, trying to find a treatment for the rare, debilitating disorder.
“We’ve gone to DC, we’ve asked for money for the NIH. We’ve baked cookies for the FDA,” said Mary.
While strides have been made, there’s still no cure and navigating adult life is enormously challenging. Sam, now 31, studied communications and Alex, 28, has a masters degree in social work but they can’t find work in their field.
“They can enlighten a workforce – they can change the culture of a workforce,” said Mary, wishing companies were more open to employing people with disabilities.
“Very, very very frustrated,” said Alex, slowly with difficulty. “You know you want to do something but you just can’t.”
The family continues to speak-out to open eyes and make a difference.
“I’m now at the point where I don’t think there will be any change for me but I’m thinking about the younger people – I hope there’s a change for them,” said Sam with feeling.
While life is incredibly tough, the family has found a way to live a happy life.
Mary says she wakes-up everyday with gratitude.
“We’re lucky we have a multitude of people that stand-by us and support us and love us and help us carry on,” she said.
Mary, Alex and Sam are looking forward to a fundraiser called Friedreich’s for NoBode: Celebrating a Grateful Life, coming up in Branford in September.
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