Shooting hoops fundraiser held for 2 boys fighting rare disease

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Shooting hoops fundraiser held for 2 boys fighting rare disease. Jeannette Reyes reports during Action News at 6 p.m. on May 18, 2018. (WPVI)

Two school communities are coming together in a fight for life for two little boys who are victims of a rare and ominous disease.

"Everybody sees these happy fun loving kids that are just playful and full of energy but the reality is that's all going to go away and that's probably a year or two from happening," said teacher/mom Emily Lieber.

Friday morning dozens of students from Meredith Elementary School and Neumann Goretti High School gathered for the second annual Hoops for Hunters Research Basketball Scrimmage.

First-grade teacher Emily Lieber and Marielle Marinoff both have boys diagnosed with the merciless disease. Only 500 boys in the United States have it.

Marielle Marinoff, President, Sock-It 2 Hunter's Syndrome Foundation said, "It's excruciating it's a horrible thought for any parent to feel like you are racing against the clock and you have a finite time to get your son treatment."

"The disease is eventually going to have these children deteriorate it affects all parts of their body due to the inability to make one enzyme there's a genetic defect they are born with. So they eventually lose their ability to talk walk eat breathe," said Lieber.

But there is hope for their boys who are still in the beginning stages of the disease. A team of doctors at Nationwide Children's Hospital in Ohio needs to raise enough funds to start a gene therapy trial. But they need just over $2 million by July. $1.2 million has been raised so far. Marinoff's foundation Sock-It 2 Hunter's Syndrome is also taking part in today's fundraiser.

Everybody purchases or donates money for socks and shirts and they come in wearing all this apparel and all the money they donate for gear then goes to the foundation.

First-grader Mimi Hunter said, "We are raising money for a good cause."

"He's very sick and we need to make a lot of money for him to feel better," said first-grader Adrianna Torcasio.

Last year they raised over $10,000. Lieber's students are clearly on a mission to make this happen.

If I were to ask you what your one wish is for her son, what would you say? "To feel better," said first-grader Mateo Scorsolini.

It really is just a race against time to get the money to make this cure happen so I just need everyone to know what you're seeing is just a for a very short window because it's all going to disappear," said Lieber.

You don't have to be a part of today's event to make a difference to contribute, you can donate online.

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