An 11-year-old West Hartford girl, who suffers Glycogen Storage Disease, and her family held a fundraiser on Monday to raise awareness of the disease and help others.
Each day, Alyssa Temkin battles Glycogen Storage Disease, which is a disease so rare it affects one in 100,000 people.
“It's a pretty rough disease,” Alyssa's mother Gayle Temkin said. “She has no feeling whatsoever if her blood sugar's crashing, so at any given moment, she can have a seizure that can be fatal."
Alyssa's family has been able to get world class care from University of Florida professor, Dr. David Weinstein. They've taken it a step further and created fundraisers such as Big Wheel Derby.
Organizers told Eyewitness News all of the money raised from the fundraiser will go to children, aside from Alyssa, to help them fight this disease.
Gayle Temkin said managing GSD for most people involves consuming corn starch every three to four hours. Alyssa's disease is an especially rare form where she must take special medicine because of a corn starch intolerance. One time, she missed a dose.
“My pump wasn't working when I woke up, I was in the hospital,” Alyssa Temkin said. “I was like, where am I?"
Through this derby and the eight previous ones, Alyssa's team has been able to support more than 60 families from all over the world in need of Dr. Weinstein's care.
“I think it's pretty awesome,” Alyssa Temkin said.
Through a partnership with Connecticut Children's Medical Center and University of Connecticut, Weinstein said he'll be moving from Florida to Connecticut to treat GSD patients in state. The doctor is working to develop a cure through gene therapy.
“We are getting units established just for this disease and there will be children and adults flying in from all over the world to get their care here and also to do the research,” Weinstein said.
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