Four-year-old with rare disorder gets chance to see normally.
Adyson wasn’t yet 6 weeks old. The doctors had known something was wrong when she was born, but this was completely unexpected. Had Kym and Ron heard correctly? Surely the doctor didn’t mean it.
“I’m sorry, but I think your daughter is blind.”
With an appointment at Portland’s Casey Eye Institute the following month, Adyson’s parents refused to give up. “I just knew in my heart that she wasn’t [blind;] they had to be wrong,” Kym said.
Their first visit to the eye institute proved to be another long day. After his examination, the doctor announced a litany of eye problems for little Adyson: glaucoma, cataracts, retinal hardening…the troubling news went on and on. Genetic testing took another four months to return a fuller report.
Adyson, it turned out, had an unusual problem. Of the more than 6.5 billion people on our planet, only 300 have the genetic syndrome known as W.A.G.R. Baby Adyson was one of those people.
People with W.A.G.R. experience a variety of health problems, and Adyson was no different. Before turning two, the little girl already had part of a kidney removed and was facing 6 months of chemotherapy. In her four short years, Adyson has undergone seven surgeries, including cataract removal.
One common aspect of W.A.G.R. is aniridia, the underdevelopment or lack of an iris in the eye. The iris controls the amount of light the eye receives. When you get your eyes checked, the doctor gives you drops that completely open your iris. You become extremely light-sensitive, which is good for check-ups but bad—sometimes even dangerous—for normal life. That’s why they tell you to wear dark glasses until your eyes recover.
For someone with aniridia, there are no drops to wear off. With no iris, light pours into the eye unchecked, painfully overloading an already damaged system. The solution? Specialized glasses to filter the light. Glasses that cost nearly $500.
Money was tight. The recession hadn’t been kind to Adyson’s family. How could they find the help their little girl needed? Thankfully, the Longview Pioneer Lions were there.
Ruth Morrill, the Club’s Sight Chairperson, contacted the Northwest Lions Foundation to set up a Patient Care Grant. The Foundation uses the pooled resources of the Endowment Fund, operating surplus from SightLife™, and MD19 fundraisers like White Cane Days to double a Club’s support for sight and hearing projects in their community.
The Foundation was more than happy to help. Soon Adyson was on her way to get the new glasses.
Early on, the doctors had told Kym and Ron that Adyson would never show interest in TV, books, or other forms of play. “I am happy to tell you that is all false,” Kym says. “In fact we put her in dance class last year to help get her reflexes back…and she loves it.”
According to Alex Conn, the Foundation’s Lions Program Manager at the time, Adyson “is obviously a fighter, and I see this grant as a very small contribution to her future.”
A future we’re sure will be every bit as bright as Adyson’s smile.