I, along with probably many of you, had never heard of Spinal Muscular Atrophy, though
it it is the number one genetic killer of children–1 in 40 people
unknowingly carry the SMA gene. When I read more about SMA1, the most severe form of SMA, and the likely
fate of “Getty,” the nickname for a sweet little baby afflicted with the disease, I had to put my head down on my desk and compose myself.
But when I
read that there is a very real chance that a cure or treatment for SMA
could be found in as little as five years, I felt hopeful. And I have to
tell everyone about this new CD since every penny of its proceeds will go
to helping find a cure for SMA.
Getty Amelia Storm’s story now has a beautiuful soundtrack created to help stomp out SMA1: A new lullaby CD called
Sweet Water Child – Lullabies for Getty. It’s an absolutely lovely and touching collection of songs that you’ll want to hear while rocking your own night owl to sleep.
The way the CD came to be is one of those stories that makes me love the way the internet connects people with all my heart. Angela and Alex of the Brooklyn indie band
The Damnwells, had been putting together a collection of their own lullabies and toying with the idea of publishing them. But, when they learned of Getty through the efforts of bloggers Stacey of
Pill’s Place and Morgan of
The818, they decided to turn their labor of love into a real gift of hope for all babies with SMA.
Lush and mellow, S
weet Water Child-Lullabies for Getty holds eleven little love songs of comfort, often with nothing more than a quiet piano backing or guitar strumming. Though most of the lyrics encourage sleep, this would be a great CD to put on anytime you just want to encourage some quiet time.
Though you’re a stronger person than I if you can get through the final song, All Of Your Fright, without needing a Kleenex. -Christina
Thank you so much for sharing our labor of love ~ Let’s stop SMA for good!
Thank you so much for your beautiful post, and thank you for helping us to spread awareness about SMA. Together we will find a cure!
Wishing you all the best,
Angela and Alex Dezen
PS–We’re now up on iTunes, as well! https://tinyurl.com/4yk8dkw Thanks again!
Thank you so very much for posting about Lullabies for Getty. Our family appreciates the awareness for SMA. If more people become aware, more people will fight, and we can cure this disease. Getty is my daughter and I thank her every day for choosing me to be her mommy. She along with all SMA children deserve us to fight for them. I thank you for giving us a platform.
I had also never heard of SMA, until it was one of the differential diagnoses for my niece. I cried too when I read about it. My niece has another, relatively rare, genetic disorder (CMT). Fortunately she is doing well and we will likely have our sweet girl for years to come. Just the same my heart goes out to any family that does have to deal with SMA and I love the idea of this CD. Thanks for sharing.
I had also never heard of SMA, until it was one of the differential diagnoses for my niece. I cried too when I read about it. My niece has another, relatively rare, genetic disorder (CMT). Fortunately she is doing well and we will likely have our sweet girl for years to come. Just the same my heart goes out to any family that does have to deal with SMA and I love the idea of this CD. Thanks for sharing.