May 3, 2015 @ 12:57 PM

by Leslie Thompson

                            Leslie Thompson 

I am running in the 33rd Annual Bayshore Marathon in Traverse City, Michigan, on May 23rd in Traverse City, Michigan. I am doing it because, well, I'm a little crazy. Haha.

The training and the actual race takes dedication and determination. The accomplishment of a marathon feels amazing. I'm not letting being legally blind stop me! It has effected my training though, because I don't live where it is safe to run along my road. I run on my treadmill, even my 20 mile run. My husband is very nervous for me, because he works hard to make sure I am safe, and not in situations that are going to be difficult for me. During the marathon there is nothing he can do but pray I don't get hurt.

I chose Vision for a Cure because Ryan (Thomason) was the first person I reached out to, with a life comparable to mine. Joyce (Thomason) later reached out to me about the organization, and after researching a few, it just felt right!  (If you would like to SPONSOR Leslie in her marathon click HERE)

I am the youngest of four children.  I am the only one in my family with Usher Syndrome. I was diagnosed with a moderately severe hearing loss at the age of two, after my grandma was shaking a toy near me, and I didn't turn my head to see it.  

I was fitted for hearing aids, and received early intervention. I was able to be successful all through grade school, with amazing teachers, and hard work.  I never let my hearing loss bother me, nor did I really ever feel judged for having a hearing loss.  I went to a great school in a small community.  I spent my years playing sports and even made the volleyball team at a small college.  

It wasn't until after my second year of college, when I went to live with my brother and his wife to work for the summer, that I was diagnosed with RP (retinitis pigmentosa), then Usher syndrome.  I was 20 years old. Some things that had happened to me before the diagnosis made sense - like why I was tripping in a movie theatre, or slowly maneuvering through the woods and needing a friend to help, while everyone else was running.  

After finding out, I flew out to see my boyfriend.  I was in need of his support. I needed him to tell me everything was going to be okay, and that he would be there for me. He couldn't, he didn't, and then he dumped me! That was a little rough, but then I went back to school, and survived with my friends.  I didn't really talk about my vision issues with anyone, as to not want to scare them off. I made choices I am not proud of now, but "Bless the Broken Road."

The summer before my final year of college, I was set up on a blind date, by my mother.  How I actually said yes, is beyond me! I met the man for me - although it took time for my brain to really register he was a keeper.  He stuck by me and did so many great things for me.  We dated for 2 1/2 years before he proposed.  We had the most magical wedding on December 23, 2006.  I don't know where I would be without him.  

A month or two before my birthday, I went in to renew my driver’s license, and I failed the vision test.  The lady made me feel so miserable because I couldn't see the stupid dots.  I left crying hysterically.  I wasn't expecting to lose my driver's license so soon. I was only 24 years old. I may have been able to drive a little longer, but night time was already terrifying, and I did not want to be the cause of an accident.  

My husband and I have three beautiful girls who are the light of my life. 
 Yes, it has been a struggle for us, but we make do with a simple life.  Simple things others may take for granted are difficult - like grocery shopping, taking the kids places, getting to work, anywhere you would want to go. We have to brainstorm the best way to make it not stressful for us to go places.  It gets frustrating at times!  

I recently had a visual field test done, and my vision has gotten worse more quickly than I expected again.  Each year I face more challenges, and have to get used to the idea of people helping me --- I've always wanted it the other way around.  

One activity that keeps me going in the right direction is running. I am so thankful I have an outlet to clear the mind.  I also focus on what it is that I want my children to see when they watch me; A strong mom that continues to work hard.  

I have to live for today, because, as my vision worsens, thinking of the future brings me sadness, which is why we need a
CURE!  A cure might not be in my life time, unless it is my miracle, but I think about the future of other children with Usher syndrome, and we need to fight for them!

If you would like to donate to Usher syndrome research click HERE
Read an article on Leslie from her local paper HERE.