Our RARE Disease Journey!!! (We Have A Diagnosis)!

Our daughter Sutton is 9 years old and has a VERY RARE disease known as Spinal muscular atrophy with respiratory distress type 1 aka SMARD1. This has left her powered wheelchair, ventilator, and tracheostomy dependent. We are so blessed to be on this journey with her. She has taught us so much and we have seen the most amazing side of family, friends, and strangers along the way!
Follow our family on our crazy adventures and Subscribe to our channel to see our crazy, adaptive world!
/ @howweroll-thekellyfamily
Thanks for following our family around and giving us the courage to keep vlogging! Please subscribe to our channel and tell your friends!
Follow us on social media (Instagram):
@emkelly0106 / @skelly0415 / @mylittlepinkchair
//Watch Sutton’s first video: FIRST VLOGGIN CAMERA • First Vlogging Camera!...
///Watch HOW'D SHE DO THAT? (SUTTON GROWS 3MM TALLER!!) • HOW DID SHE DO THAT? ...