Dear Friends and Family,
This journey began for us shortly after our son, Eli, was born in April 2019. At first, everything seemed normal: he ate, he slept, he cried. His big sister, Emelia, loved kissing him, proudly declaring that he was her baby. But something was off. He was extremely irritable and uncomfortable. He screamed for hours on end. He didn’t want to eat because it was too painful to swallow. Doctors said it was just colic, but when Eli’s development slowed and he began missing milestones, we knew something was very wrong.
After countless doctor’s visits, hospital stays, a brain MRI, EEGs, vision tests and more, a genetic test revealed the root cause: Eli has a rare neurological condition that severely impacts the brain called FOXG1 Syndrome – a devastating condition caused by a mutation in the FOXG1 gene that reduces the amount of a protein critical for brain development. There’s no cure. There are no clinical trials. Existing research is limited.
To receive such a diagnosis is like receiving a repeated punch to the gut. You gasp for air; you cry; you scream; you grieve; you ask questions. How? Why? What kind of life will Eli have? What will his capabilities be? What is his life expectancy? How will our daughter’s life be affected? Will our lives be filled with continuous heartbreak? Plus a million more. And we live it every minute, every day. It is truly a parent’s nightmare.
Unfortunately, what’s known is very bad. There are only ~700 known patients in the entire world, nearly all of whom are under age 10. Some have died. Most are unable to walk or talk, suffer dangerous seizures, require feeding tubes, are visually impaired, have sleep disorders, and live in wheelchairs. Eli has over 20 weekly therapy appointments. Non-stop doctor’s visits. Many medications. Lots of unknown. And the sobering thought that the healthy future we all wish to have has been painfully ripped away from us.
Those who know us know two things: (1) We love our kids endlessly; and (2) We’re going to fight like hell to cure this condition. We refuse to accept Eli’s prognosis or to sit idly by while nature runs its course. So we started BELIEVE IN A CURE, a 501(c)(3) tax-exempt charity. Time is of the essence, as the window of opportunity to intervene with a treatment is limited and closing with each day.
We need your help.
We need to raise $7 million to fund the incredible projects we’ve already begun at MIT, Harvard, UMass, Tel Aviv University and UC-San Diego – with more coming soon. So we’re doing this the old-fashioned way: a grassroots effort to literally give a voice to the voiceless. And though FOXG1 Syndrome is rare, there are established links between FOXG1 and much more common diseases like Alzheimer’s, Autism Spectrum Disorder and Schizophrenia, so our work can literally help millions.
Please help save our son and others impacted by this horrible condition, and be as generous as you can be. Our minimal administrative costs are 100% covered through private donations, so literally every penny we receive goes directly to research. You can visit our website for more info:
http://www.webelieveinacure.org We believe in the power of community – we believe that tomorrow can be made better than today through our effort – and we believe that when ordinary people come together, we can do extraordinary things. We’re so grateful for your support.
With love, humility, and sincere thanks,
Ilissa, Scott, Emelia, and most especially, Eli Reich (who will thank you himself one day!)
