October 1, 2012
Sienna’s Splash presented by McCaffrey’s is happening this Saturday at 2PM (Just 5 days away)! We have raised over $35,000 so far and are well on the way to our goal!
Sienna had fun at swim class this weekend, though this time she only wanted to “coach” a baby doll rather than do much swimming herself. We think she must be tapering for Saturday!
We have a few more exciting silent auction items to announce:
- President and Mrs. Bush will donate one personalized, signed bookplate each to be inserted into a copy of their books, Decision Points and Spoken from the Heart. Since the bookplates will be personalized, the winners will receive the books and bookplates after the event.
- $150 card making class from the Paper Source
- Delicious Gift Basket from Princeton’s Bon Appetit Fine Foods
- Fleeces from our good friends at US Rowing
We also wanted to give you an update on Sienna and a reminder about why we are raising funds. Sienna suffers from FOP (Fibrodysplasia Ossificans Progressiva), a rare genetic disorder that causes muscles and other soft tissue to progressively turn to bone. She is currently doing great and is a happy, typical 2-year-old girl who loves swimming, flowers and anything “fancy.” However,
Sienna’s FOP flare-ups have been active for several months now and she has lost some mobility in her shoulders and her neck. She currently has a large flare-up on her left shoulder blade and a small one on her belly. Hopefully they will continue to get smaller without leaving excess bone behind.
She is looking forward to seeing all of you, but we wanted to remind everyone that as trauma (even mild bumps) and illness are known triggers for FOP flare-ups, to please be careful around her and if you are sick, please try to keep your distance. If you are well, bring on the (gentle) hugs! We greatly appreciate your help in keeping her safe and healthy until effective treatments are ready!!!
This weekend we also re-watched “Extraordinary Measures,” an inspirational story about a father who helps found the biotech company that develops effective treatments for his children’s rare genetic disease. It is such an amazing story and renews our fight each time we think of it! Effective FOP treatments are SO CLOSE!!!
We can’t wait to see you all in 5 days!
Rory, Eric and Sienna