As I woke up this morning, I realized I woke up later than I intended. Hopping out of bed and quickly getting ready, I was downstairs and out the door in less than 30 minutes. I left so quickly that I forgot my laptop charger, which I just realized is at home.
I was on my way to the Embassy Suites Hotel near the airport here in Nashville. The story was on a family conference for Cockayne Syndrome. I’d never heard of this rare disease before, so everything was new to me. I walked into the building and got my first glimpse of the effects. A young girl, by the name of Eden, was unable to walk or talk due to her case of CS.
Eden Carroll is only one of the few suffering from this disease. She has CS Type II, which means her expected lifespan is seven years. Eden is 4. It took a lot to not just break down. After all, I had a job to do and that was inform others of this disease. Haylee and Tim Carroll, her parents, already had another son with the same disease. He died at the age of 5.
It was sad to see the parents loving a child that they knew was going to die soon. I just felt emotionally drained after seeing this. The sad thing is that doctors pretty much have no clue this disease exist. Doctors at Vanderbilt University didn’t even know. Luckily, the Share and Care Cockayne Syndrome Network is dedicated to educating those who don’t know about it. Feel free to visit their website at http://www.cockaynesyndrome.org.
I did meet a little girl that was able to talk. She stopped walking at the age of 3 and now needs a walker. Samantha Lazazzaro was a sweet girl, moving around and saying “Hi” to me. It was heartwarming to see that. However, I felt bad for her, as she has CS Type II as well. Samantha will be six in August.
While the story made me feel sad, I am glad to have done it. I got to see a disease I’d probably never seen otherwise, and now I can inform others. The most memorable thing about this day was that Samantha wanted to give me a kiss. I obliged and she kissed me on my forehead. That’s a memory that will live for a lifetime.
