Her name was Hannah-Rose. She came into our lives on January 18, 2009. She passed all her newborn screenings, weighed a healthy 7lbs 30z. Everything appeared normal at first; but, at four months of age her mommy noticed she was not meeting the milestones that she should. Her mommy took her to the doctors seventeen times before they diagnosed her with Spinal Muscular Atrophy Type 1 (SMA).
Spinal Muscular Atrophy or SMA is the number one genetic killer of infants under the age of two – it kills more babies than any other inherited disease. 1 in 40 people UNKNOWINGLY carry the gene responsible for SMA. SMA Babies are perfectly healthy at birth and their minds are NEVER impacted; but as weeks and months go by their bodies begin to fail them.
After six hospitalizations in six months and after doing every possible to keep our Hannah with us, she passed away just five days before her first Christmas, just one month before her first birthday and just a day into her 11 month of life here on earth. Our Hannah taught us more in the short time she was with us than anyone has ever taught us in a lifetime! She endured the hospitalizations, treatments and more than any adult could ever endure with JOY and a smile on her face that outshined the sun. Our family has forever been changed, for the better, by the visit of our little hero…Hannah-Rose!
Why Does HOPE for SMA Exist?
HOPE for SMA Exists to FIND, GET & GIVE HOPE to children affected by SMA because there is NOT ENOUGH education, awareness, support or adequate medical services available to children suffering from this disease! Until the cure is here Hope for SMA will continue to share the SMA Story and raise awareness and funding for families affected by this horrific disease.
Please join us in the SMA Battle and help us spread the word about this baby killer disease; don’t let SMA blindside you as it did our family. Awareness Saves Lives.
Written by Julie, Hannah-Rose’s Grammie