Around the holidays, I try to compose or find stories to blog that I feel will warm the hearts of many.
The story of an experimental therapy treatment that helped sixteen year Christian Guardino from going totally blind, is definitely one of those stories.
Leber’s Congenital Amaurosis (LCA) is a rare genetic disorder that attacks people’s vision. The disorder causes one to only see bright lights and have blurred vision. LCA, eventually causes loss of vision leaving one severely visually impaired. I learned of this disorder when Christian’s story was featured on the CBS Nightly News.
Christian who was a contestant on the show America’s Got Talent and has LCA, set the stage on fire with his soulful rendition of The Jackson Five’s song, “Who’s Lovin You.” Christian was also one of the few who received the honor of the golden buzzer advancing him on to compete for the grand prize. His talent was undeniable. Learning of his challenge with LCA and how he handle it with grace and dignity, made him even more amazing.
Christian’s mother, Beth learned of a gene therapy while searching for information that she hoped could help her son. Beth heard about Dr. Jean Bennett and her husband Albert Maguire’s research of this therapy and decided to reach out to them. As fate would have it, Christian was a perfect candidate to receive this new therapy. Because of the therapy treatment, Christian’s vision improved tremendously.
Christian’s story alone with others, were presented before the FDA where a panel made recommendations to approve the treatment.
Because of this treatment, many people suffering with LCA vision problems will hopefully have their sight restored to the point they can live a better quality of life filled with all the colors of the rainbow and amazing gifts of opportunities.
As a person who has a disability, I would try a therapy and/or treatment if I thought it would enhance my quality of life as long as it was FDA approved. Don’t get me wrong, my life is pretty great but if they came up with a treatment that could make me walk better, I’d be all over it.
No one knows what the next day will bring. Science is so advanced, I’m hopeful one day there will be cures, treatments and therapies for every disease as well as disabilities.