Somewhere around the time I was hosting Lydia's first birthday party, the idea for her second birthday flashed in my head. "Tea for Two" quickly morphed into a full on Mad Hatter's Tea Party! I am falling in love with all things Alice and definitely plan on using a LOT of the original illustrations from the Lewis Carrol publication. I have been Photo-shoping during much of my time in the hotel in Phoenix pre and post marathon. I think until she is old enough to put her two cents in, and probably for quite a while after, I will plan the party ridiculously early.
And that brings me to the main point of today's post, I am grateful to have the privilege of dreaming about my child's birthday years in advance. A friend of mine is not so lucky. Her daughter was born last year and appeared to be perfectly healthy. Sadly, she did not meet her physical milestones and the doctors determined that she suffers from SMA, spinal muscular atrophy. This little girl is intelligent and otherwise healthy. Her muscles are failing her. This is a genetic disease and 1 in 40 people are carriers. People don't usually find out that they carry the gene until their child is born with SMA, and at that point it is a death sentence. Thankfully, my friend has hope for a cure. 
The Gwendolyn Strong Foundation is a finalist for a Chase Community Giving Grant. This foundation is SO close to finding a cure. The award from Chase could speed things up and might mean a cure during the preciously short amount of time my friend's daughter has left. PLEASE consider going to the website and voting. You have to have a face book account to vote, but other than that it is free and just might save the lives of countless babies. Here is the link.
Cheryl,
ReplyDeleteThank you so much for spreading the SMA word. The race isn't over yet and every vote counts. We would love nothing more than to see Nora turn 2, 3, 16 ;-)
BTW, Lydia is soooooo cute. Good luck keeping the boys away!!!!