PORT WASHINGTON, N.Y. (CBSNewYork) — A Long Island family whose 2-year-old baby has a rare brain disorder is racing against time.
Eli Reich just turned 2, yet despite intense therapy, he doesn’t have the ability to sit up, walk or talk.READ MORE: As Pandemic Restrictions Ease, RSV Virus Making A Comeback
But he does have parents on a mission to change his fate and, in the process, help millions of others.
His genetic disorder afflicts only 700 children in the world.
FOXG1 syndrome comes with a devastating prognosis.
“The problem is that he has a typo in his gene. He has one extra letter in the wrong place and that throws off the entire genetic code,” Eli’s father, Scott Reich, told CBS2’s Carolyn Gusoff. “He is not expected to walk, to talk, to feed himself and, really, to do anything independently.”
“So your son is never going to say a word to you or he’s never going to walk to you … And it kills you inside,” mother Ilissa Reich said.
“We decided to take matters into our own hands. There was limited research when we got into the field, and we decided that we were not going to accept the prognosis,” Scott Reich said.
In less than a year, they’ve launched “Believe in a Cure,” raising nearly $2 million.
Their goal is $7 million to summon research on three fronts: drug repurposing, gene editing and, at University of Massachusetts, gene replacement therapy.
“To deliver normal copy of the FOXG1 gene back to patient so that we can compensate what has been lost,” said Professor Dan Wang, with UMass’ Horae Gene Therapy Center.READ MORE: Stony Brook University Hospital Participating In COVID Vaccine Trial For Children Under 12
It’s a dream within reach, say researchers, but Wang says, “For any intervention, the earlier, the better, so we are essentially racing against time here.”
Success has wide potential applications for autism, Alzheimer’s, schizophrenia and brain tumors.
“The idea of impossible is fiction. That’s simply something that hasn’t been done yet, so we are going to change the course of this condition and help push the entire field of science forward,” Scott Reich said.
In one week, a family appeal was shared hundreds of thousands of times, prompting donations from strangers.
The family also believes in community.
“It’s just very heartwarming and really makes situation, a horrible, horrible situation, a little bit better knowing there’s good people out there,” Ilissa Reich said.
“We are just overwhelmed and we are surrounded by heroes,” Scott Reich said.
The Reich family is clear they’re not putting their faith in only a miracle; they believe in science and a cure and are working tirelessly to make it happen.
Children with FOXG1 syndrome rarely live more than 10 years.MORE NEWS: Study Shows COVID Vaccine Booster Helped Increase Antibody Levels In Transplant Patients
For more information and to donate, visit webelieveinacure.org.