Laila's Life with SMA

Our Laila Mei is full of life and personality.  She can light up a room and command it with her exuberant spirit.  We adopted Laila from China in December 2013, diagnosed with cerebral palsy.  While her freedom and mobility have always been limited, we had accepted her condition as it were, that she would never walk, but also never get "worse."   Horribly, her diagnosis was wrong, and we have recently received the dreaded diagnosis of Spinal Muscular Atrophy, or SMA.  She can sit but loses her balance easily.  She has very limited movement in her legs and cannot lift her head, or crawl, or walk.  SMA is a genetic disease that is degenerative, progressive, and incurable.  As she gets older, she will become weaker.  This disease not only affects her mobility, but all voluntary muscle movement like breathing and swallowing.  She faces risk of respiratory distress as her breathing muscles weaken and she is more suseptible to sickness.  While this may be true, we want to focus on today and today Laila is very happy and healthy.  Laila is a beautiful, active, spunky, smart girl who has a lot to give and a life to live. 

For those of you who don't know her adoption story, you can read about the first day I met her in a Chinese orphanage here:
http://joslynninchina.blogspot.com/2012/03/i-woke-up-this-morning-with-nervous.html 

Our initial fundraising goal is set at $10,000.  We are quickly learning the limitations of Medicaid and currently they will not help us cover costs to build ramp access to our house for Laila's power chair nor funds for vehicle modification.  There is also important equipment and therapies that insurance doesn't cover.

I am scared of what needs our Laila will have that are not yet known to us and of how many times we'll need to reach out to our incredible network for help and support. But I am also grateful that the current obstacles are ones money can "buy!"

Many of you have already given to us and we are so deeply grateful. The love, support, and care you have given are immeasureable, incredible, and truly truly appreciated.

With Love,

Jason, Joslynn, Steven, Laila, and Charlet