Our daughter Lexi was born on March 30, 2011. She was born in Junction City, Kansas right outside of Fort Riley. I am in the Army so about 3 months later we were moved to Fort Belvoir, Virginia which is about 20 minutes south of Washington D.C. Little did we know we would soon need all the great medical specialist in the D.C. area.
Lexi seemed to be progressing and hitting all her milestones until about seven months of age. As she got older we started noticting that she just wasn't moving very far past the age range of 6-8 months. We thought maybe she is just a late bloomer. She could never walk or crawl or scoot, all she could do is, if we stood her up against a toy she could stand there for a few mintues and sit...and she was a great sitter. She could rock back and forth and clap her hands and reach for toys like a pro, but thats as far as she got.
..Lexi seemed to be progressing and hitting all her milestones....
At 13 months we saw a developmental specialtist and she was diagnosed with Autism. Our hearts were broken to hear this news....we just wanted her to be happy and healthy. At about 14 months we started noticing that she couldnt sit anymore or reach for toys like she used to. She kept falling over, so we saw a neurologist to get all the testing done.
Her neurologist didnt tell us anything, he just said that he saw something on the MRI and that he was going to refer us to Children's Medical Center in D.C. At 17 months, while waiting on the referral, Lexi had her first seizure. It was the scariest thing I have ever seen. I felt so helpless just sitting there watching my baby seize and not being able to do anything about it. She was airlifted to Childrens and our lives where changed forever.
I felt so helpless.....
Two weeks later, August 2, 2012, she was diagnosed with Infantile Tay-Sachs. Since that day we have taken each day one day at a time. We take lots of photos and videos and just enjoy our precious Lexi every chance we get. Lexi has a 4 year old sister named Lena who she loves so much. Everytime Lena talks or laughs or moves or anything she does Lexi will just crack up. We take each of these moments and just thank God that we have such a precious angel.
Lexi has really changed our lives and has touched so many people in her short time already. We pray everyday for a cure.
For more information about Lexi and updates on her health and family please visit: http://www.lexiforlife.com/index.html.
Bryan & Tracy Gordon, October 2012