Jason's mobility campaign

Most of us wouldn’t think he's so lucky, but few of us have met Jason Burns. He's an amazing person who inspires everyone he meets, a unique and wonderful human being who refuses to surrender, no matter the odds.  

All his life, people wanted to be Jason’s friend. Even today he is the positive guy who raises everyone’s spirits with humor. He’s the happy one. The person everyone loves.

Especially his family.

One day, twenty years ago, Jason’s life veered sharply. He began walking with a strange gait. His balance and coordination fell away. His motor skills declined. It was sudden and noticeable. Something was very wrong.

Sometime later, a team of specialists delivered terrible news. Jason had a rare, awful disease known as Friedreich's Ataxia. So scarce that only four doctors in the world treated it.

So rare that even today, after all this time, almost no-one has heard of it.

Friedreich's Ataxia is a progressive disease. It destroys all of the muscles in the body. Jason began walking with a cane. Soon he needed a manual wheelchair, then an electric one. Eventually he couldn’t move without the help of a lift.

The one in the photo above.

Jason's pain is constant. A year ago, pneumonia racked his compromised immune system. Care could no longer be provided at home. He left his loving family, his wife Tina and two children, and moved into the Albany County Nursing Facility. At 44 years of age, Jason is the youngest patient there.

With Friedreich's Ataxia, the only surety is the disease will worsen over time. It might even rob Jason of his sight and hearing, but leave him with his mind and speech. Or not. No-one really knows.

“But I’m the luckiest guy in world,” Jason often says to anyone who will listen. “No-one has a family like mine!”

Five times a week the family picks Jason up and takes him home for dinner. The trip requires a specially equipped van that is slowly wearing out. Last month alone the repairs ran $2,000.

Jason’s family needs help. Twenty-four hour nursing care is expensive. His monthly disability allowance will soon be totally allocated to the nursing home. Tina works to support their two children and, of course, Jason. After taxes the state deducts another 20% to help pay for the nursing facility. His father, Larry, now in his seventies and fighting his own battle against illness, works two jobs to help meet the monthly expenses.

His wonderful, warm family is Jason's lifeline. The special van that’s required to deliver him home and back is on its last days. The electric wheelchair runs on prayer.

Friends have gathered around the family, now stretched far too thin. To preserve Jason's lifeline, a good, used specially-equipped van will cost $60,000. A new electric wheelchair runs $7,500.

Our goal is $67,500. With your help, we’ll make it. Thank you!

Donations

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  • Mariann Ceccucci 
    • $200 
    • 43 mos
  • Beverly Signoracci 
    • $50 
    • 43 mos
  • Don Batting 
    • $200 
    • 43 mos
  • Marie Barnes 
    • $50 
    • 43 mos
  • Joe Barnes 
    • $100 
    • 43 mos
See all

Organizer

Barry Forbes 
Organizer
Cohoes, NY
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