5-year-old inspires dad to create nonprofit helping those with rare diseases
ALBERTSON, New York (WABC) -- Eyewitness News joined a visit to the Viscardi Center in Albertson, with 5-year-old Eli Reich, his father Scott, and the team of extraordinary staff guiding him through kindergarten.
Most students say good morning very quickly, but for Eli it takes enormous focus. But little Eli can use touch or his eyes to communicate, doing math, and spelling his name.
Eli has a rare condition known as FOXG1 syndrome. There are only a thousand known cases globally.
"FOXG1 Syndrome is caused simply by a mutation. A typo in our DNA. So in Eli's case, he has one letter in his DNA in the wrong place, in one copy of one tiny gene," Scott said.
The result of that tiny typo is that his body can't create the right amount of a protein, preventing Eli from doing all sorts of basic things like walking or talking.
But Eli understands plenty. You can see it in his smile and when he gets the answers right.
"He's very aware of people," said Catherine Elefonte, Eli's Kindergarten Teacher. "He's very aware of what's being said. He understands."
"And so it's a double-edged sword in the sense that he has the capacity to understand, to comprehend, which is uplifting, and at the same time he's to a degree, trapped, which is very sad," Scott said.
Eli has two siblings and lives in Port Washington with his family.
His father has spent years advocating for those with rare diseases and started a non-profit called "Believe in a Cure."
"We have funded over 50 projects globally," Scott said. "Unfortunately, children with this condition have died. We don't have any time to waste."
By definition, a rare disease is a condition afflicting 200,000 or less. But here's the thing, there are more than 10,000 different types of rare diseases out there. Suddenly the numbers are not so small anymore.
"We're talking about a gigantic population. It is believed that there are approximately 400 million people worldwide who have a rare disease or are living with it," Scott said. "And we can choose to live, despite the harshness of the hand that we've been dealt."
They are choosing.to celebrate the wins as Eli unlocks them in a journey so few of us understand.
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