Community Corner

Caruso Ready for Community Day to Cure FA

North Branford resident Mary Caruso is hosting a fundraising event for Friedreich's ataxia this Sunday.

Few people have heard of Friedreich’s ataxia, but in the mid-‘90s, virtually no one knew of the disease. Mary Caruso’s mission since her children were diagnosed is to change that.

According to Friedreich’s Ataxia Research Alliance (FARA), “Friedreich’s ataxia (FA) is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich's ataxia.”

Caruso found out about FA the hard way. Both of her daughters developed the disease at a young age. Sam and Alex, now 24 and 21, were diagnosed at age 8 and 6, respectively.

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Caruso had no idea that she was a carrier for FA, nor that her ex-husband was.

Both Alex and Sam were born healthy and active as youngsters -- Sam played sports and Alex was a dancer. But when Sam was 8, she began to display symptoms of FA, including losing her balance. It took months to determine the cause of Sam’s symptoms.

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“There was no information out there when Sam was diagnosed,” Caruso said. “It was very lonely and very scary. Back then people thought I was crazy. The doctors thought I was making things up and it was really hard to get a diagnosis.”

A year later, Alex -- then 6 -- began to show symptoms, too. Both girls were able to walk for a couple years before using walkers for a brief time. They then began using manual wheelchairs and, eventually, progressed into power chairs. FA affects almost all aspects of the body, except mental capacity.

“It affects growth, motor, fine motor, your heart, your speech, your spine. You can develop diabetes,” Caruso noted. “But the mental capacity stays intact so you realize just how awful it is.”

Positivity and Perseverance

Despite the hardships, Caruso worked hard to instill a positive attitude in her girls. She credits her parents and her upbringing for her upbeat outlook.

“Teaching them how to live life to the best of their ability was a big obstacle­ -- as a parent, it was devastating,” Caruso said. “I have a lot of faith and I’m very resilient so that combination has given me the background to help them when they need help and to be tough on them when I feel they need to rise above the occasion and persevere.”

Sam and Alex certainly have persevered. Sam graduated college last year and Alex is commuting this year after living on campus last year.

In addition to her family, Caruso said the North Branford community has been an excellent support system. Though she grew up in Rocky Hill, Caruso attended Paier College of Art in New Haven and then chose to raise a family in North Branford because it “reminded me of growing up in Rocky Hill.”

“I’m very lucky because, with the help of the community, they have done wonderful things to our home so it’s very accessible,” said Caruso, whose daughters went through the North Branford school system. “North Branford is a wonderful, warm community; the people are very kind, caring and helpful. I’m lucky that we stayed here and we’ll probably always be here.”

Her North Street house is going to be the home base for a fundraising event -- -- on Sunday, Sept. 11. In addition to a walk, the event includes a picnic catered by Outback Steakhouse, admission to the Historical Society and barn and musical entertainment by Red Ridge, along with Billy T and the Special Guests.

Rallying for Research and Awareness

Caruso has been fundraising for FA since 1995, when Sam was diagnosed.

“One of the first things I did when Sam was diagnosed was to start raising money for research because very little was being done. I connected with some wonderful parents who formed Freiedreich’s Ataxia Research Alliance (FARA), where money will go,” Caruso said. “It’s a great organization that not only raises money for research, but reaches out to scientists and other organizations.”

Caruso was a director for FARA and now is an advisor; though she will always be a founding director. Her involvement in FARA has connected her with several other families affected by FA.

Another resource she has found is the fourth annual Friedreich’s Ataxia Symposium (see PDF), which will take place on Oct. 8 in Pennsylvania. The event also includes a bike ride, which Sam will participate in since she has learned to ride an adaptive bike. Sam will kick off the walk this Sunday on her bike as well.

In addition to raising money for research, Caruso’s other goal is to raise awareness, not only about FA but about compassion and acceptance as well.

“It’s important to look beyond the physical -- the wheelchair, the speech, the fine motor­. People should understand they hurt like everybody, they feel like everyone, they have wants and needs like everyone else,” Caruso said. “If we can all learn to accept everyone and not be so quick to judge, it’s half the battle.”


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