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Local Six Year Old Boy Battles Rare Disease But Doesn’t Give Up Hope

Local boy battles rare genetic disease, Friedreich's Ataxia (FA). Learn about his family's journey as they fight to save lives and cure FA.

Local Six Year Old Boy Battles Rare Disease But Doesn’t Give Up Hope

Gavin Lambert Battles Friedreich’s Ataxia

New Port Richey, FL — Gavin Lambert is a typical six year old boy who loves matchbox toy cars (and has a collection of 2,000 cars!), admires comic superheroes like Spider Man and enjoys playing with his younger brother.

But Gavin’s parents, Dawn and Kevin, had a parental instinct about their son. They noticed Gavin had difficulty in the way he would run, play, and draw. Despite numerous visits to the doctor, they always came back with an answer that nothing was wrong. Their son, Gavin, now six years old, started showing signs at age two that something was just not right. 

The Lambert’s talked to several of doctors about Gavin, but no diagnosis was offered about the coordination difficulties he was having. All tests came back negative. This was a mystery no one could solve.

That was until Thanksgiving of 2010 when Gavin had a seizure and was hospitalized. The pediatric neurologist carried out genetic testing and found a diagnosis no one in the Lambert family had heard of before, Friedreich’s Ataxia (FA).

Friedreich’s Ataxia (FA) is a debilitating, life-shortening degenerative neuromuscular disease typically affecting children and young adults. Often, signs and symptoms include loss of coordination (ataxia) in the arms and legs, fatigue - energy deprivation and muscle loss, vision impairment, hearing loss, slurred speech, and life shortening heart complications – all while still completely aware.

“The doctor said ‘you should do what you want with your son because he will not live past his 20’s,” explained Dawn. “We couldn’t believe what the doctor said. There was no helpful information on FA or what we could do. We were terrified and lost.”

At the doctor’s office, the Lamberts grabbed a magazine that featured an article about FA. The article had a story about Kyle Bryant, a young man also diagnosed with FA and who founded an event called Ride Ataxia through the Friedreich’s Ataxia Research Alliance (FARA). “Kyle was 30 and could ride a bike. There was hope,” Dawn said. 

That’s when the Lambert’s journey would change. “I now know we are not alone.” said Dawn.

"The experience with FARA has been absolutely wonderful. There are many families affected in the same way. I can call FARA anytime.”


Kyle Bryant, with his 3-wheel trike, is Gavin’s hero. “He pushes himself.” Dawn said. “He is always last and gets tagged out first. But he still likes to try. There is Paralympics sports in Tampa. We went to a couple practices and will be participating this summer.” 


Gavin doesn’t know he has FA. He knows his ‘Daddy and Mommy’ work with FARA to raise money for his vitamins and help his feet because they hurt so badly. “I know I can’t do much as I’m not a doctor.” said Dawn. “I can, however, fundraise to help Gavin and other FA children.”

How can you get involved to get Gavin and others with FA? Join us for the FARA Energy Ball at the A La Carte Pavillion on September 8th, 2012. For more information about the event visit, http://curefa.org/energyball/index.html.

For more information about Gavin's story, visit: http://www.kickinfa.com/.

About Friedreich’s Ataxia Research Alliance The Friedreich’s Ataxia Research Alliance (FARA) is a national, public, 501(c)(3), non-profit, tax-exempt organization dedicated to curing Friedreich’s ataxia (FA) through research. FARA grants and activities provide support for basic and translational FA research, pharmaceutical/biotech drug development, clinical trials, and scientific conferences. FARA also serves as a catalyst, between the public and scientific community, to create worldwide exchanges of information that drive medical advances. For more information about FARA, visit them online at www.curefa.org.

This post is contributed by a community member. The views expressed in this blog are those of the author and do not necessarily reflect those of Patch Media Corporation. Everyone is welcome to submit a post to Patch. If you'd like to post a blog, go here to get started.

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