His Life Changed in a Blink of an Eye with LHON
In January 2014 our son, Keith McGovern who is 8 ½ years, old starting complaining that he couldn't see the blackboard/smart board in school. His teacher e-mailed and called me letting me know that Keith was having problems seeing in class. We made an immediate appointment with Keith's regular eye doctor assuming he probably just needed glasses. Keith even told me "I think I need glasses, Mom" and I told him "the eye doctor will tell us if you need glasses or not". After the eye exam the doctor said, and I quote, "The good news is Keith doesn't need glasses" but when we inquired more about why Keith could not see the doctor did not have an answer. He then sent us down to Wills Eye Institute in Philadelphia, PA on March 6, 2014 to see his colleague and we also met with a genetic counselor to just go over our family tree to see if there had been any issues with any family members regarding vision. I did tell her that my mother's brother went blind at the age of 18 but they never knew why. By this time my husband and I were dying inside wanting to know what was going on. The doctor wanted to rule everything out before he gave us an answer. By this time is was almost 5pm and after a long day of tests after tests after tests with our son Keith the diagnosis was to be revealed to us.
He told us on paper your son Keith is Legally Blind. Well, my husband and I just started crying. "How could this be?" we said. "What do you mean Keith is Legally Blind?" The doctor told us Keith has what is called Leber's Hereditary Optic Neuropathy (LHON). Our next question was "Ok, how do we fix it?" and his answer was "There is no cure for what your son has and there is no way to stop his vision loss".
There is no way to predict how much sight Keith or anyone will lose. LHON is an optic nerve disorder that can suddenly cause the loss of central vision. It is a genetic mutation passed from the mother to all offspring, however not everyone who carries LHON mutation loses vision. It is a very rare condition, affecting about 1 in 50,000. They believe this is what caused my mother's brother to go blind. Typically males in their prime-late teens to early 20's start to have symptoms, but this genetic defect can happen at any age and to females as well. We left Wills Eye Institute almost 12 hours later with the diagnosis. I have to say the best piece of advice the doctor had given us was "to let Keith be an 8 year old boy, Keith will tell you what he can or cannot see."
We now have a new life to live with Keith and his little sister Hayden. We are trying to raise money for medical expenses (he needs help to support him by providing him with all the tools needed for him to successfully complete his education and to continue to live the carefree, happy life of an 8 ½ year old boy) we would like to travel to California to see Dr. Alfredo Sadun at USC'S Doheny Eye Institute in Los Angeles, CA. He has over 600 LHON patients.
For more information about Leber's Hereditary Optic Neuropathy please visit the following website:
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