A Miracle In Our Midst
By Edie Johnson
This year’s Evaning of Hope celebration and recognition of those families struggling with a member who has Rett Syndrome was able to share not only some incredible progress in its field of research, but an amazing triumph by one young lady named Eva Fini. Her parents hold a gala affair for fundraising every Summer, and NOBODY throws a party like Albert and Aimee Fini. Why? Because they have been fighting for a fully-functioning life for their daughter who developed Rett Syndrome, as many afflicted with it do, at a very young age. So once again this week the Fini estate that overlooks the Goshen, Chester and Blooming Grove Valley was filled with 500 supporters who raised $270,000 toward a cure, with a raffle, silent auction, catered dinner and dancing under the stars. Businesses all over our area donated items (art works, products, collectibles and vacation trips) for the auction, with starting bids beginning at around $100 for some items and up to $6,000 for others. To date the family has raised $1.2 million for the Eva Fini Fund.
Approximately one in 10,000 girls struggles with Rett Syndrome as the result of a single gene abnormality that results in speech and movement disorders among other problems. Eva will be having two surgeries to alleviate the effects of associated spinal stenosis.
It was always obvious that Albert and Aimee would move mountains for their daughter, with the dream that one day she would speak, read, connect with others and grow increasing intellectual capacity. In fact, they just about did move mountains, but not alone. Eva has had a full-time therapeutic support system that extends from her immediate family to all of Orange County and beyond. The Goshen community of school friends and teachers were the epitome of inclusiveness before the word even became common parlance. Her therapists quickly became part of ‘the family’. And ‘the family’ quickly grew to businesses throughout Orange County and the entire New York Area where Albert is a very respected home builder. ‘The family’ grew to include hundreds of other families with similar challenges, including 9 that attended this year’s Evaning of Hope, and one child just diagnosed at the age of two. And ‘the family’ grew to include an entire scientific community including Rett Syndrome Research Trust and Harvard University.
Recently the scientific community has announced that next year they will conduct the very first clinical trials with gene therapy. The Fini family has worked with and supported this research since the first promising studies were done with rats that showed that the neurological problem COULD be reversed. Later studies showed that there was a ‘gut-brain” connection and that nutrition-related medications could help alleviate symptoms, which result primarily from a faulty protein that disrupts a neurological synapse. When gene manipulation studies began to be shared between research teams several years ago it became obvious that protein replacement or CRISPR gene therapy could be a light at the end of the tunnel. Dr. Michael Greenberg, PhD and Chairman of the Dept. of Neurolology at Harvard says “We’re on the verge of a revolution”. But none of the therapies or potential cures could have advanced if it were not for the dozens of facets of community support. Just one example: Just before each summer’s Evaning of Hope her neighborhood puts up a flurry of blue balloons and signs saying “We Love You Eva!”
Small Miracles Make Steps Toward Big Miracles
And so the family, the community and the researchers have worked their hearts out. Most importantly though, so has Eva. With every step being geometrically more difficult than it was for others, Eva herself has moved mountains.
Not to discount Eva’s continuing struggles and that her outstanding accomplishments are but strong beginning steps. Speaking with her mom, Aimee, yesterday we learned that this year she speaks, makes regular efforts to communicate, reads, and uses a small computer device. There is another even more capable Eva waiting to step forward. The skies are the limits for this young lady, and her smile foretells of what an amazing future lies ahead.
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