Who is Getty? Getty Storm is a little girl who has SMA 1 and is celebrating her 1st birthday. Her parents Kate and Mark were devastaded when they showed up to a typical pediatric appointment and were told their precious baby girl had Spinal Muscular Atrophy, a fatal disease. Typically, babies with SMA Type 1 have a life expectancy of between one and two years, and they require around-the-clock medical assistance and monitoring
“Kate has written that early on, in their deepest moments of despair, she doubted that they’d be celebrating their little girl’s first birthday with her.”
Last week Getty Storm turned one, a huge milestone for an SMA baby! On Tuesday, April 5th, she is getting her birthday present an album dedicated to her. Lullabies for Getty via iTunes. This special album was recorded by The Damnwells.
“We wanted to give her this very special album of Lullabies both to commemorate the occasion, and help her brave and determined parents work to ensure that other families won’t be faced with that dark and devastating.”
What is Spinal Muscular Atrophy (SMA)?
It is the leading genetic killer of infants and young children. It is a terminal, degenerative disease that results in the loss of nerves in the spinal cord and the weakness of the muscles connected with those nerves. SMA impacts the body’s ability to walk, stand, sit, eat, breathe and even swallow. The mind and spirit of a child with SMA are no different from that of a healthy baby, but the body eventually fails.
Please help by purchasing “Lullabies for Getty” and support the SMA 1 cause.
These babies need our help!
FOR MORE INFORMATION, PLEASE VISIT:
Getty Owl Foundation
OTHER RESOURCES:
Sophia’s Cure Foundation
Hope for SMA
SMA Space
The Gwendolyn Strong Foundation
Comments
OH MY GOD DO NOT click that “play” button. I’m in a puddle of tears over here. Buying.
Again, thank you so much for your support! It really means so much! xoxo-