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Student Science Project Teaches School About Rare Disease

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Spencer James holds his cousin Jamie who suffers from GSD. (Source: CBS4)

Spencer James holds his cousin Jamie who suffers from GSD. (Source: CBS4)

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MIAMI (CBS4) – It’s not every day that a winning science fair project at an elementary school makes news but in this case, it does. It’s because a South Florida elementary school student invented something that taught everyone at his school, including the teachers, something they didn’t know about.

When 10-year old Spencer James entered the Howard Drive Elementary School science fair, the first thing he thought of was his 10-month old baby cousin, Jamie.

“It’s easier because he could just sleep without being waken up in the middle of the night to be fed,” said Spencer.

He’s talking about his invention.

His cousin Jamie has GSD, Glycogen Storage Disease. He’s missing the essential enzyme in his liver that creates glucose which fuels the body so he needs constant food. Jamie has to eat every two to three hours so his parents rely on a feeding tube.

It’s become normal for Jamie’s parents, Meri and Grant Gussin, but disrupting his sleep to feed him multiple times a night was a problem and he constantly pulls on his port. That’s when Spencer came up with a solution.

He invented a onesie with a pocket so the feeding could take place without disruption.

Jamie’s mother said it’s really helpful, thoughtful, but most importantly, it’s spreading awareness which the Gussins’ say is their primary goal.

“He woke up sweating and panting and she knew that something wasn’t right,” said Jamie’s dad Grant.

Babies who aren’t diagnosed and treated right away will likely die because their blood sugar will drop to fatal levels.

“I held him in my arms, instead of putting him in his crib and going back to bed because we really think we would have lost him that night,” explained Jamie’s mom Meri.

They learned while the disease is extremely rare it is primarily found in Ashkanazi Jews, Easter European Jews.

The baby eats about 11 to 12 times a day and as he gets older he should be able to go longer than 2 to 3 hours without food. There has been positive research. The disease has been cured in dogs so the Gussins are hopeful there is a cure for humans soon. In the meantime, inventors like Spencer will just make sure babies suffering from GSD are just a little more comfortable. Spencer won not only first place at his school but in the regional competition as well.

“I thought it was cool because I did something not for me, but for my cousin,” said Spencer proudly.

Jamie’s mom is also very proud.

“He’s a 10-year old kid, he thought about his new baby cousin, went out of his scope of what’s him and thought about someone else, and thought about us, and the compassion that we saw was just so touching,” said Meri.

There is a fundraiser for GSD to raise money and awareness. To find out more information go to www.curegsd.org. 

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