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Huge Turn Out For Girl Battling Disease

Huge Turn Out For Girl Battling Disease CINNAMINSON TOWNSHIP, N.J. (CBS) — Golf for a Cure in Cinnaminson on Tuesday was all about helping to raise money for a 3-year-old girl suffering from a rare disease.

The golf tournament quickly sold out, with so many people wanting to help the family from Hatboro. Molly Duff has something that most doctors have never seen.

“It gets me so emotional. The support, it’s just overwhelming unbelievable and amazing,” Molly’s mother, Angela, said about the turnout on Tuesday.

Golfers rolled out across Riverton Country Club to raise money for research that will hopefully save Molly’s life. Molly’s father, Kevin, is the golf pro at Riverton.

“Molly has a disease called hereditary spastic paraplegic type 47 and SPG47,” Molly’s dad Kevin, who is the golf pro at Riverton, said.

It’s a neurodegenerative disease that attacks nerves. Molly’s parentsknew something was wrong but they didn’t get the diagnosis until she was two.

“They told us that Molly’s the only one known in the U.S to have SPG47,” Kevin recalled.

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And because it’s so rare .. doctors didn’t have a treatment, no way to stop the loss of muscle tone that makes walking difficult

“We had a tough few months. To not really know what to expect, to not have much to go off of, it was scary,” Angela said.

“When anyone hears that their child is going to possibly be wheelchair bound by 12 or 13, it’s devastating,” Kevin said.

Instead of being paralyzed with heartbreak and fear, Kevin and Angela Duffy got to work and found other families, as they started a foundation called Cure SPG47.

“We have two research projects we started that we’re funding to make sure we do everything we can to make her life the best possible,” Kevin said.

Molly is one of only 20 people in the world confirmed to have SPG47, which is caused by a gene mutation.

Her parents are hoping the research they’re funding finds a way to stopthe progression of the disease. For more information, visit here.


Author: http://philadelphia.cbslocal.com/2017/09/12/hundreds-turn-out-to-raise-funds/ - Stephanie Stahl

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