Port Washington parents of 2-year-old with rare disorder search for a cure
The parents of a 2-year-old Port Washington boy who has a rare disorder have created a not-for-profit and are funding international research in hope of finding a cure.
Eli Reich has what's called FOXG1 Syndrome, a rare neurological condition. There are only about 700 documented cases worldwide.
Scott Reich, Eli's dad, says the disorder causes cognitive impairment. He says Eli doesn't have enough protein that is created by the gene.
"He literally has a single letter typo in his genetic code in this gene, and as a result he doesn't have enough protein," says Scott.
Scott says because Eli doesn't have enough protein, so it throws off other life functions.
"When I hear anything, I think to myself maybe one day he's going to see mom, or maybe one day he is going to walk to me, or maybe one day he'll be able to play something with his sister who is dying to play with him," says Ilissa Reich, Eli's mom. "And it brings something to my heart that I just think they said there has to be something."
The Reich family created Believe in a Cure and has raised about $2 million in less than year. Multiple research projects are currently underway at places including Harvard, MIT, University of Massachusetts, and Tel Aviv University.