SMA it Forward by Cashel

My mom told you wanted to share SMA kids stories. Hope you like mine.

Hello, my name is Cashel Gardner; this is a pic of me and my sister Allie. Allie and I have a genetic disorder called Spinal Muscular Atrophy, SMA. I am 15 years old and Allie is 13 years old! Pretty good for the doctors telling our parents we would die before our 2nd birthday huh?! Spinal Muscular Atrophy, SMA is a genetic disease that causes a baby or child to become completely paralyzed from head to toe but can feel everything. It happens at different degrees with the worst form Type 1, (which is what Allie and I have) can cause death by 18 months of age. We cannot sit up, hold up our own heads, swallow or even breathe on our own, which is why death will happen unless intervention is used. We both have tracheotomies and need a ventilator to breathe for us. We have G-tube's in our stomachs so we can eat, basically we cannot move any of our muscles at all.

I bet you think this is a sad, feel sorry for me message but it is FAR from that, I don’t want you to feel sorry for me, Allie or any child with SMA. I want you to feel strength and hope because I want to show you how we are LIVING with SMA! I think my life is the GREATEST and I wouldn't change it for the world, God gave it to me and I will do what I can to live it the way He wants me too.

I have started a Facebook page and website to teach the world about SMA and to show the world the AMAZING SMA kids and families that are LIVING with SMA. It is my version of Pay it Forward, I called it SMA IT FORWARD (get it? like it?) On my page I share pictures, videos and stories of AMAZING SMA kids, teach what SMA is and the care that is needed for a child with SMA. And everybody just asks for more and more, they truly care and want to know about this disease that is the #1 Genetic killer of children under 2 years old and that 1 in 40 people ARE CARRIERS OF WITHOUT EVEN KNOWING. I was even contacted by a professor at UNVL to be a guest lecturer at UNLV for Grad students in a special education class via Skype; and I have done it ALL FROM MY BED. I CAN ONLY MOVE MY FINGER TO TRIGGER A SWITCH TO USE MY COMPUTER! See, if I can do all of this and affect so many people across the world it will also show people that they can do things to make a difference. Please check out my page and help me SMA IT FORWARD, the more people that know about SMA the more people can join together and FIGHT SMA. Here is my FB page and a little video that shows you my world and how I am doing this.
Love, Cashel Gardner

"Embrace The Suck"

Too find out more about SMAitForward like Cashel's facebook page https://www.facebook.com/SmaItForwardWithCashel?ref=nf
To make a donation to help fund a cure http://www.sophiascure.org/donate