When Siena was first diagnosed in March 2011 with Prader-Willi Syndrome we were given the lengthy list of all the characteristics associated with this rare disease. At the time, the thing that hit me the hardest was when they told me she would most likely never have children or live on her own.
A few weeks ago I was going through Siena’s worksheets from school and came upon this one that immediately brought back all of the emotions I had 5 1/2 years ago and my heart was in my stomach. And then I showed my husband, and he said, “Jamie, Siena could be a mom.” His positivity is what gets me through most days, and his words have become my mantra ever since.
And after attending the conference in Rhode Island this past weekend with so many other positive families, doctors and scientists, I am convinced more than ever that the road to Siena living an independent life is being paved by The Foundation for Prader-Willi Research and all of the family and friends supporting it…..and maybe, just maybe… one day Siena WILL be a mom OR ANYTHING her sweet little heart desires!
SOOOO everyone LOVES to get a deal, right??? Well, RIGHT NOW there is an amazing opportunity to double your money! A very generous family, Leon and Irina Shaulov, have pledged to match EVERY SINGLE DOLLAR raised for FPWR from now until Thanksgiving Day, November 24th. That means whatever you donate will be DOUBLED to fund research and find a cure for our kids.
Since we did not have a walk this fall and many of you have asked how you could help this year, we are asking that you consider making a donation of any amount. Thank you to all of our family and friends for everything you do for us and for all the love you give our Siena Eve! This is an exciting time. We remain hopeful that Siena, and all her friends, will — one day — live an independent life!
CLICK HERE for Siena’s donation page:
http://onesmallstep.fpwr.org/…/use…/sienaeve/virtualwalk2016
Siena Eve 