Our son Cashel was diagnosed 14 years ago with SMA Type 1. We had so many questions and got very little answers, we went to the library, found NOTHING; we searched the Internet, found next to NOTHING, so we quizzed Cashel’s doctors and got some information but not much except, “Take him home and love him he WILL die by 18 months”. This was unacceptable to me! So, we just learned as we went and never gave up, losing Cashel was not an option. By the time Allie was born 2 1/2 years later we had almost lost Cashel over a dozen times due to choking on his own spit, he spent weeks in the hospital, he had pneumonia, got his G-Tube and finally, we gave in to a tracheotomy and a ventilator. Allie was also diagnosed with SMA Type 1, but this time the doctors said “Take her home and care for her like you do Cashel because you defy the odds”. Allie had the blessing of being the 2ND child as we had learned how to care for and what to do in emergencies with Cashel, so she never had it as hard; we gave her a G-Tube and trach at 7 months. We have been so blessed over the years our family has grown and changed, Cashel is now 14 years old, Allie is 12 years old and I also have 6 year old Emily that is SMA free.
It is amazing the progress that has been made in 14 years and all the advanced treatments that were not available to Cashel and Allie when they were babies. We always felt we were alone with our fight against SMA until one day a few months ago I somehow connected on Facebook with another family fighting SMA and now we have a huge SMA family, I have been talking to Cashel about the families I have recently met on Facebook, all the precious angels out there fighting for their lives and about Dr. Kasper and his gene therapy research. When I found out about the 200 commitment I jumped at the chance to help. See, I often talk to Cashel and ask if he wishes he was a regular kid that could walk and play sports and stuff and he always replies “No, I like me”. So I wasn’t surprised when I talked to him about the 200 commitment and what it would mean to SMA and possibly him and his sister if human trails could begin and Cashel said ” I would rather Allie and all the other babies be helped first”. Our commitment is made on behalf of not just our family but to the other SMA families we have never met in person but love deeply, and to the families in the future that have probably never heard of SMA until they get the terrible diagnosis that will change their lives forever.
On behalf of the Gardner/Barber Family
(Cashel Gardner, Allie Gardner, Brandon Gardner, Matt Barber & Emily Barber)