'Eva-ning of Hope' raises $170,000 for research

GOSHEN — Even as she struggles with the effects of Rett Syndrome, Eva Fini of Goshen still smiles radiantly. And when she feels the outpouring of love from her Goshen community and beyond, her smile only gets brighter.

Those who attend the annual "Eva-ning of Hope" fundraiser are doing their part for a cure. They're hoping new treatments will brighten the prognosis of the beautiful girl who tackles her everyday chores with grace.

With her parents, Albert and Aimee, setting the tone, people from all over the county have given their hearts as well as their money. They make the yearly trek to the grandest party around, a fundraiser to find a cure in time for Eva to be free to enjoy more of the pleasures that other children her age do.

"We Love Eva" signs and blue-starred "Conquer Rett" balloons adorn the drive up Bella Vista Drive to the event, now in its sixth year.

The support was amazing. Albert Fini filled half of the tents with sumptuous food and drink. Aimee was worried they'd top 400 and run out of seats for the guests.

As a vivid sun set over the valley, the neighboring fields filled with well-wishers wanting to help, either through direct monetary donations or donations of gifts to be auctioned off.

On the autism spectrumRett Syndrome is the most physically disabling of the autism spectrum disorders. Primarily affecting little girls, it usually strikes by 18 months of age and leaves those it affects severely disabled. Most children with Rett are unable to talk, walk, or use their hands. Extreme anxiety, Parkinson-like tremors, intractable seizures and orthopedic problems are common.

Eva is lucky. As Rett Syndrome goes, she's not at the severe end of the spectrum. Her sisters and their friends help out every day and run fundraisers of their own.

And there's real hope on the horizon. In fact, Eva is already a miracle of sorts — for the progress she's able to make daily, like walking and running and negotiating stairs.

The coordination requires some extra effort. She spends many hours a week with therapists who help grow the skills she needs of daily living.

Until recently there was little understanding of this neurological disorder, and no treatment. Now there are both, and while there's still no cure, some treatments for symptoms are promising, and an army of researchers are looking at the genetic defect that not only causes the symptoms, but may give clues toward a real cure.

For more information about the Eva Fini Fund or to make a donation, visit http://evafinifund.org.