I have, and I remember the day and time I received my diagnosis.
On September 24, 2013 – 5:30 PM…. I got a call from my Neuro-Ophthalmologist. He broke the news to me , “I just got you’re Leber’s test result. It came back POSITIVE. Now we know what you have and I’m sorry you have it. I know you have kids… how old are they?……”.
That was the call that changed my life forever. That was the call that sent my family into the world of Leber’s Hereditary Optic Neuropathy. That was the call that told me I was going blind and there was no treatment or cure.
Those kinds of unexpected calls are devastating! They bring on feelings of shock, anger, disbelief, confusion, and asking HOW is this happening to me? …. and what the hell do we do now?
I know I’m not the only person who has received a call like that. Families all over the world have been called and told they have the LHON genetic mutation running in their family. I’m sure most of them remember the day, and perhaps the time, of that call.
I hope… and pray… that each year, when September 24th rolls around, I find myself in a stronger place than the year before. More “cans” less “can nots”, more “laughter” less “tears”, more “party” less “pity”, and kicking ass as a….. Girl Gone Blind!
*Thankful for the support of the LHON Facebook groups and for the people I have met (on the phone or in person) in this community! xx
MARIA, MY DEAR FRIEND….
THAT PHONE CALL HAS PROPELLED YOU TO HEIGHTS I COULD NOT HAVE IMAGINED…YOU ARE A ROCK STAR AND NOW MORE AND MORE PEOPLE KNOW IIT…..LOVE TO YOU MARIA HAYES JOHNSON
Thank you auntie Myra! x0x0
You have come a long way in this past year. Yes, it is the most devastating news one can receive and I very well remember July 2nd when my daughter got her call.
We hope to be in your area this winter and would love to meet you for coffee one day.
Hi Pat! As you probably know by now, I had A wonderful phone call with your daughter last week! We sharec our stories and challenges…. I enjoyed the call very much! we will definitely keep in touch! Please do get in touch with me if you come my way at any time…. I would absolutely love to visit with you!! Thank you for your message! 🙂
Stay strong, Maria – you are doing great and are such an inspiration!
Thank you Melanie! One day at a time… right? Hugs to you!