August 16, 2012
Title: A Close Call, Gal Pals and Sienna’s Splash
We wanted to extend a warm thank you to all of you who have touched our lives this month. You have given us tremendous personal support and helped us raise awareness and funds by sharing our Facebook posts, making your own beautiful posts, and telling your friends about our battle to cure FOP. As many of you regularly ask how Sienna is doing, we wanted to share our recent news.
A couple of weeks ago we had a very scary moment when we found a flareup on the right side of Sienna’s neck and then one on the left side quickly followed. She has been going through the endless cycle of flareups since January, but this was the first one outside of her trunk since her diagnosis in May. We decided to administer Prednisone for the first time. There aren’t many hard guidelines in FOP so there is always some guesswork involved. Thankfully, it has seemed to help as the neck swellings have gone down (her neck hasn’t had full motion for a while, but we don’t think additional motion was lost) and it helped reduce a giant flareup on her right shoulder blade that had been there for weeks. So far nothing new has come up since the course ended a week ago, so we have our fingers crossed and are praying that we can keep future flareups away until effective treatments are ready!
Rory’s college Gal Pals put together an amazing care package of individually-packaged safe crafts and games to keep Sienna happy while we discourage her from running around like a wild animal. It is truly the most amazing thing any of us have ever seen – our friends are so caring, thoughtful, creative and organized!! THANK YOU Gal Pals!
Additionally, this past weekend we attended the wedding of our dear friend, Aly, on the dairy farm where her groom, Paul, grew up in Wisconsin. It was a beautiful setting and every detail of the weekend was meaningful. We could go on and on about the wedding but will leave it to a few key updates that are of special significance to Sienna:
The Bride! Sienna was very taken by Aly the gorgeous bride and went on and on giggling about her and her beautiful dress. Aly gave her a white flower and Sienna has talked about it ever since! Also, Aly organized a 5k on the morning of her wedding day and made it the Tiger Tail Trail Run for Sienna. Only Aly would want to do a run on her wedding day, let alone use it for such a wonderful cause! We are so humbled and honored and want to extend our heartfelt thanks to Aly, the runners and walkers, and the drivers of the “sag wagon” hayride who gave Sienna (and Rory) a lift!!
COWS! Sienna loved meeting the cows on the farm – she spent all week picking out outfits that cows would like (cows like floral patterns, of course) and picked flowers to give the cows as presents. She was hysterically happy to meet them and went wild when she was allowed to pet one!
Sienna’s Splash Swimathon
We are preparing for our first fundraiser on October 6th in Princeton, NJ. So far we have raised about $3,000, great progress! The fundraiser is a battle of the sexes and the women’s Tigress team is crushing the men’s Tiger team so far! They have earned the rights to wear swimsuits, goggles and paddles, while the men are still swimming in full clothes. Help that Tiger team earn those swimsuits! Or sign up to come watch the men struggle in their clothes!
Our friends are hilarious and super competitive, so by popular demand we are going to add a layer of competitiveness. The first team to get to the $25,000 goal can take gear or time AWAY from the other team or add obstacles to the lanes of the opposing team. We will be in touch again with the final details but be prepared for a fun and hilarious day! Suggestions are welcome. Keep helping us get the word out – the more the merrier, whether you swim, watch, or sponsor remotely!
As far as our battle to help cure FOP, in total we have:
- Received almost 16,000 website views generated by over 3,000 visitors
- Raised over $48,000 for the IFOPA to fund research for a cure!
Lots of love and hope,
Rory, Eric and Sienna