4-year-old, family keep hope in the face of blindness
A rare congenital disorder is robbing the sight from Finley Pletcher's beautiful blue eyes. The 4-year-old has been declared legally blind and retains about 10 percent usable vision. She will eventually go blind.
Hope for a treatment for Finley and others with degenerative retinal conditions lies in research. Finley's family is raising research money with a picnic this Saturday in Connellsville.
Finley is the daughter of Jennifer and Mathew Pletcher of Salem, Conn. Her parents are from Connellsville. Her grandparents are Ted and Phyllis Kovall of Connellsville and Ben and Sally Pletcher of Indian Head.
A year ago, Finley was diagnosed with Leber's congenital amaurosis due to mutations in one of the 14 LCA-associated genes, retinol dehydrogenase 12, RDH12, a very rare degenerative retinal disease that causes vision loss.
Jennifer Pletcher said, "There is no cure and nothing they can do to fix it. It is progressive, and our sweet Finley will eventually lose her sight. How long that will take is anyone's guess. We have seen several retina specialists, and we will continue to watch her vision decrease over time. This diagnosis kills us. Our sweet baby with the beautiful blue eyes may have a life of darkness. It makes me want to run out and get every kids' movie ever made so she can see everything now before her vision goes for sure. I can't imagine her not being able to see all the wonderful things this world has to offer."
Only 3,000 Americans have LCA, inherited through recessive genes. Both parents must have the gene in order for the condition to possibly be passed to their child. Mutations occur on 14 genes. One can be treated. So far, Finley's cannot. Only 120 Americans have Finley's LCA type, located on one of the 14 LCA-associated genes, retinol dehydrogenase 12 (or RDH12), the rarest mutation.
Jennifer Pletcher said, "Life is 10 percent what happens to you, and 90 percent how you react to it. We don't know what Finley's vision will be in the future, but we do know that it will never get in her way of being great. God doesn't give children with disabilities to strong people. He gives them to ordinary, everyday people, then he helps the parents to grow stronger through the journey. Raising a child with special needs doesn't take a special family, it makes a special family."
Finley is learning to use a brailler and will soon use a cane in order to prevent falls. Although too young for kindergarten, the Board of Education for Services for the Blind of Connecticut is already working with her family to develop a range of services once she begins school.
In addition to receiving services for Finley, the Pletchers are reaching out to others, by raising money for the Foundation Fighting Blindness.
The FFB's national efforts drive research to provide prevention, treatment and cures for those with a spectrum of retinal degenerative diseases. Although Finley's condition is very rare, 10 million Americans suffer from other degenerative retinal conditions that cause blindness. Research offers hope for breakthroughs.
The Pittsburgh chapter of the Foundation Fighting Blindness will host a walk to raise money and awareness Oct. 2. This year's goal is $65,000.
The Pletchers and the Kovalls hope friends and family will donate to blindness treatment research.
The Kovalls will hold a barbecue at their home, 1231 Sycamore St., Connellsville, PA, 15425, beginning at noon Saturday.
For a $25 donation, $50 for a family, guests will enjoy lunch, a Finley Fighter magnet and a chance to meet Finley and her family.
Those who cannot attend the barbecue but want to donate, may make checks to the "Foundation Fighting Blindness" and send it to the Kovalls at the address above.
Finley Fighter T-shirts will be for sale at the barbecue, and the Pletchers will register walkers for the Oct. 2 FFB walk. It will take place in Pittsburgh's South Side, 27th and Sidney streets, with registration at 9 a.m. and the walk beginning at 10 a.m.
"The more people who know about the foundation and its work, we hope will tell four more people and the word will spread," Phyllis Kovall said. "We're so appreciative of the support. It gives us hope."