I am Constantine's mommy, also known as Luciante. As a mommy it is my job to do everything I can to keep my children healthy and happy. That job for Constantine is a little more difficult than usual becuase he was born with a genetic condition called Spinal Muscular Atrophy (SMA). There is currently no cure or treatment for SMA...But that WILL change. They are getting close. Reasearch for SMA is the closest to finding a cure than any other genetic disease and there are countless individuals who are working hard to make a cure a reality. Research for SMA also will benefit other genetic disorders like ALS and Multiple Sclerosis.
It is my goal to run this 26.2 miles for Constantine in the hopes to raise enough money to help fund the vital research for a cure.
Spinal Muscular Atrophy is a disease that affects the motor neurons, which causes muscle weakness of varying degrees. One in 6,000 babies is born with SMA worldwide and one in 40 people are genetic carriers. SMA is the #1 genetic killer of babies under 2.
We had never heard of SMA until Constantine was 8 months old and was diagnosed. We were devastated. We have been dedicated since that day to make Constantine's life the best it can be and to support every effort to END this disease.
Constantine is (sorry, I'm biased) the coolest little boy in the world. He is smart (at 2 1/2 he knows all his letters, shapes, numbers and names of everyone he meets including our chiropractor the "Pretty Nice Guy"). He's funny , sweet, silly and friendly (and the boss of the world). He is so happy despite all his limitations. He loves to collect trains and the cars from the movie CARS ( in which he has 29 and his colletion still grows). He also loves his dogs and his little sister, Aurelia (except when she steals his cars or trians from him). Constantine deserves the best, and we know that with all the research being done for him and all the other amazing kids with SMA -THERE WILL BE A CURE.
My dream of dreams is that Constantine will someday walk and run and play. I will be almost equally elated if he is someday able to eat without a feeding tube, or cough without a cough assist, or not need to wear a Bi-Pap at night to help him breath. He has the most inner strength and perseverance I have ever seen and he deserves a cure.
Please help find that CURE for Constantine! Thank You. Thank You. Thank You.
Yeah! Great job Lu! We will follow your blog and give a donation too! We're rooting for you!
ReplyDelete- Kim & Levi and the kids