Salem community joins fight for little girl's sight

Finley Pletcher, 4, plays with her siblings, Arlington, left, and Cainan, Tuesday at the Pletcher home in Salem.  Finley has a rare genetic eye disorder that eventually will cause her to lose her vision entirely. She wears dark sunglasses to help slow the disorder's progress.
Finley Pletcher, 4, plays with her siblings, Arlington, left, and Cainan, Tuesday at the Pletcher home in Salem. Finley has a rare genetic eye disorder that eventually will cause her to lose her vision entirely. She wears dark sunglasses to help slow the disorder's progress.

Salem - Finley Pletcher dashed across the hardwood floor in the family dining room and ran into the kitchen.

After she slipped on her shoes, she pleaded with her father, Mat, for her vitamins, a daily treat.

Once outside, 4-year-old Finley climbed on the family swing set with her brother, Cainan, 4, and her older sister, Arlington, 8. After a brief crying episode when she bumped her arm, Finley was all smiles as she flew down a nearby slide, again and again.

Finley's parents, Mat and Jennifer Pletcher, say this is Finley's general demeanor. Other than the thick, protective glasses Finley wears, you wouldn't know that she is already considered legally blind.

After visits to several doctors and eye specialists, Finley was diagnosed in 2009 with a rare genetic disorder called Leber's Congenital Amaurosis that causes the retinas in her eyes to slowly die.

She sees dark spots in her vision now and has only 10 percent of normal retinal function. She could be completely blind by the time she is a teenager. But that doesn't hinder her activity, her parents said.

"She has this personality that she's really carefree. It doesn't really faze her," Jennifer Pletcher said. "For her, it's the only thing she knows."

That hasn't kept the Pletchers from fighting for a cure.

They founded Finley's Fighters, creating T-shirts and wrist bands to raise money and awareness. Last fall, the couple helped jump-start the RDH12 Fund For Sight.

Finley's version of LCA is caused by the RDH12 gene, which is especially rare, the Pletchers said. They said an estimated three people in 10 million are diagnosed with Finley's version of LCA.

On Saturday, the MOMS Club of Salem will hold a pancake breakfast from 9 to 11 a.m. in the Christian Education Building of the Congregational Church of Salem. All proceeds will go to the RDH12 Fund For Sight.

The Pletchers have already helped raise $70,000 that will go toward research at the University of Pennsylvania.

"Unless we moved (the research) forward, no one else was going to," said Mat Pletcher, who runs a toxicology lab at Pfizer. Jennifer Pletcher is a registered nurse at Haddam Elementary School in Higganum.

"And we would lose precious time that's going to cost all of our (RDH12) kids vision. That's not something we were willing to do," he said.

The Pletchers also said they try to balance optimism with pragmatism. Finley is visited at home by a teacher twice a month, and she is learning Braille. Administrators at the Salem School are also working to accommodate her needs when she enters kindergarten in the fall.

But the Pletchers, who moved to Salem from Jupiter, Fla., a few years ago, also have said they've been floored by the support of families and friends in the community. Deborah Pazzaglia, of the MOMS Club of Salem, said her organization jumped at the chance to make a difference with someone in the community.

"In a year's time, the answer could be there," Mat Pletcher said. "It could be in a lab, in a test tube, waiting for the next step."

jeff.johnson@theday.com

If you go

What: Pancake breakfast, sponsored by the MOMS Club of Salem.

When: Saturday, 9 to 11 a.m.

Where: Congregational Church of Salem

Cost: $10 per person or $25 per family.

More information: www.finleyfighters.com and www.rdh12.org

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