1) We're Home : 2) The Petition to Cure SMA

  1. Yay! We are home. I don't have much to say for now, but we're getting back into the daily grind. Emily still requires frequent treatments, but we're off of supplemental O2 and stuff (hence going home), so it's just a matter of maintaining her recovery and keeping her happy. We came home to no nursing, so no relief until Tue or so. We're good. :)

  2. I keep forgetting to make a note of this, but there is a Petition to Cure SMA that YOU ALL NEED TO SIGN! If you've been following our story and are wondering what you can do, please follow the link and sign the Petition to Cure SMA!
    • SMA is an inherited genetic disease that results in loss of nerves in the spinal cord and weakness of the muscles connected with those nerves.
    • SMA is the #1 genetic killer of children under the age of 2.
    • SMA is estimated to occur in nearly 1 out of every 6,000 births.
    • The gene mutation that causes SMA is carried by 1 in every 40 people or nearly 7.5 million Americans.
    • There is currently no treatment and no cure, but the National Institutes of Health (NIH) and the National Institute of Neurological Disorders and Stroke (NINDS) have selected SMA as the disease closest to treatment of more than 600 neurological disorders.
    • Researchers estimate that we are as close as only a few years away from finding a treatment and/or cure.
Thanks and Peace <><

Comments

Sky said…
YA!!!! Im so glad to read your all home and doing good, sorry no nurses until tuesday, but Im thinking you guys can handle it :)
Devon said…
Hey Nate, can I tag Emily's blog on Dakin's list?

I'm so glad you're home!!! Congrats!!!!
Dawn and D.J. said…
I'm so glad you're all home! Welcome back to Maryland!
jackie said…
emily is a little cutie ,and a brave little girl.im so glad your all home safe and well.ive been following your familys journey with sma since last christmas ,i hadnt heard of sma till then it is so heartbreaking.