Rare brain disorder changes family’s perspective

When their son Eli received the diagnosis of a rare brain disorder in September 2019, time stopped for parents Scott and Ilissa Reich.

Once the initial shock dissolved, they dove headfirst into finding a cure.

Eli, 2, has FOX G1 Syndrome, a condition that causes severe cognitive impairment. Symptoms include nonverbal communication, immobility and seizures. Thus far, there are only 700 known cases worldwide. Nearly all patients are children under 10.

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From left: Ilissa, Scott, Emilia and Eli Reich (Courtesy: Reich family)

The Reich family, a lawyer and former fashion executive based in Long Island, founded Believe in a Cure, which seeks to raise $7 million for a cure.

Patriarch Scott Reich spoke on Zoom about his new normal.

“We were not going to accept this fate,” he said. “We were going to try to develop a treatment that would benefit Eli and other impacted kids.”

The Reichs partnered with several renowned research hospitals and institutions on several projects, and raise money through private donations. One-hundred percent of all donations go towards research.

“We connected with as many people as possible who we thought could be helpful,” said Reich. “We have been very fortunate to have their generosity in wanting to help us.”

The research conducted focuses on understanding how the rare disorder manifests in different people, and finding viable treatments.

Life Changes

Life expectancy for FOX G1 is unknown at this time.

“We know the quality of life is not high,” said Reich.

Knowing how tough the odds would be, Reich’s wife gave up her career in fashion to devote herself to taking care of their son full-time. They are expecting their third child this month.

“She has devoted herself to being able to give Eli the best opportunities that he can have,” he said. “I think that it has brought out the best in her.”

Dealing with a son with a rare brain disorder has also helped the family connect with others like them.

“On the one hand, it is comforting to know there are other people going through something similar,” he said. “On the other hand, it is just a reminder of all the challenges that lie ahead.”

For now, Reich knows how raising Eli changed his perspective on life.

“We used to think just about long-term things,” he said. “Now we are focused on what are we doing to get through the day.”

For more information on Believe in a Cure, visit www.webelieveinacure.org

Correction: The statement ‘one-hundred percent of all donations go towards administrative costs for the charity’ is incorrect. All costs go to researching a cure. News to Stay Sane regrets this error.

Published by Mallika Rao

Freelance Writer, Blogger

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