Twenty Nine years ago today, I gave my husband a son for his birthday! Today as I look back it’s always bittersweat. Why do certain days bring such floods of memories. I still remember sitting at the table in Colorado Springs telling my husband how excitiing it would be to have the baby that day! Well that evening our son Brian was born and life was so good. My husband was killed in a car accident in 2000 and now every year we don’t say much but it is always kind of a downer for Brian that his Dad isn’t here to celebrate his birthday with him. It’s just another one of life’s little curve balls like LHON.
This page is for the Mom’s (and Dad’s) of LHON affected. Our concerns and emotions about this disease are different than those of our Sons & Daughters. In the 8 years since my son lost his sight, there has been no place to disccuss my feelings or concerns about this disease. We, as Mothers unknowly pass this gene to our children and I can’t speak for you, but I have had a lot of emotions that have gone along with this, guilt, sadness, loss and yet always needing to be strong for my son. I would like this to be a place that we can converse, tell our stories and maybe occasionally pass some advise to one another.
This may not be the ideal platform but we can make it work. To tell your story or ask a question, use the comment feature and we’ll see how that works. You can email me your story at firstname.lastname@example.org and I will post it to this page. You can use word and just attach it to an email or copy and paste it into the body of an email.
This is something I have wanted to do for years and with all the advancements in reasearch, now is a great time, so feel free to share and maybe we, as the Mom’s of LHON Affected can realize we are not alone in what we are going through with our grown children.
Looking forward to hearing from you!
Christy Aston – Brian’s Mom