Sela Cornell - Parents Hopeful About a Cure

Mike and Chrissy Cornell went to the same high school in Chicago but never met until they lived in Breckenridge, Colorado several years later. Mike worked for a non-profit education center often teaching adaptable skiing techniques for paraplegics and the visually impaired. Chrissy was also a ski instructor. They fell in love and after they married, moved to California for work opportunities and excitedly awaited the birth of their first child.

Mike and Chrissy were overjoyed with the birth of Sela, but within the first few months of her life noticed a lack of visual responsiveness and unusual roving eye movements. Initially doctors weren't concerned about this condition, known as nystagmus, but when the condition persisted, they sent Sela for numerous tests. At first they suspected a brain tumor, and later focused on the retina.

"Your daughter has Leber congenital amaurosis and there is no cure." Those devastating words from the doctor would forever change the lives of Mike and Chrissy.

Baby Sela was only six months old when the diagnosis came. Leber congenital amaurosis or LCA, is a retinal degenerative disease that causes severe vision loss at birth and can lead to total blindness.

"You are never prepared to hear something like that," says Mike. "We were crushed. We didn't know where to turn."

Needing the support of family and friends, the Cornells packed up and moved back to Chicago. "It was a very dark time for us," says Chrissy. "We needed time to grieve. And although we set out right away to get Sela the special help she needed, we felt so sad, overwhelmed, and alone. We didn't know how long it would take us to surface from our grief."

Eventually the Cornells did surface, in part because they met David and Betsy Brint, who also have a son with LCA. (David is Vice President of the Board of the Foundation Fighting Blindness.)

"David and Betsy were so open and warm and invited us into their home," says Chrissy. "After we left their house I remember thinking, ‘they were laughing and joking around-they are such a happy family.' It gave me hope that we could be happy too."

The Cornells decided that they wanted to do whatever they could to help fund research for LCA. They started a fundraising triathlon, raising money from family and friends. "Once we started doing something positive, we felt better, more connected," says Mike. "It reminded us that there are people out there who are willing to help support Sela and her family."

Sela, now four and a half, is learning Braille and has started using a mobility cane, which she decorates with little charms and colorful tape, and proudly tells friends and strangers that it "helps her see."

"We are so proud of Sela and her development, and thanks to the research advances in the past few years we are very hopeful about a cure. It's no longer a question of ‘if' a cure will be found but when."