May 30th, 2013

Today, May 30th, 2013, marks the one year anniversary of Sienna’s diagnosis with FOP (Fibrodysplasia Ossificans Progressiva). Each day we try to raise awareness and funds for FOP research by sharing Sienna’s sweet smile and love of flowers But life with FOP is far from a continuous bouquet of flowers.* Over the past year, the FOP community has lost several people and many others, including Sienna, have endured flare-up after flare-up. For 365 days, I have lived in fear of what tomorrow could bring.

But I also live with tremendous gratitude and hope. I am thankful for the doctors and researchers who focused on FOP long before it was on our radar, making an effective treatment a very real possibility within the next few years. I am thankful for the families who have fundraised every waking hour to keep those teams in business. I am thankful that Sienna was diagnosed accurately, without initial misdiagnosis or devastating biopsies (many patients are not so lucky, a fact that especially resonates today as we pray for a 2-year-old member of our community who is currently in critical condition). I am thankful for the way each and every one of you has come into our life because through your network and support, we will beat this.

Above all else, I am thankful for Sienna. She is such a sweet, caring little person. She is a chatterbox. She is stubborn. She is crazy smart. And she is funny – she made me laugh so hard that I cried last week, which was a nice change of pace from the reasons that usually make me cry. And I hesitate to put this in writing because I don’t want to tempt FOP, so I am knocking on wood and throwing salt over my shoulder and praying as I write this, but she is currently doing great. So far none of her major joints have locked up. Her spine is almost totally fused, but she works around it, squatting instead of bending over (which makes her lose her footing). She can no longer lift her arms straight up, but she can still, just barely, reach the top of her head. If we could stop FOP’s progression TODAY she could live a 99% “normal”, 100% awesome life doing just about everything but hanging from the monkey bars, and who really needs monkey bars anyways?When each tomorrow could bring a new flare-up, timing is critical. Please to help us find more gardeners and raise the funds needed to field a clinical trial that could save Sienna’s life. If we could reach 188,000 more people who each buy a $5 flower, we will get there!

Lots of love and hope,

Rory (Sienna’s Mommy)

*In reality, if you live with Sienna, life actually IS a continuous bouquet of flowers, picked from anywhere she can find them, including neighbors’ yards. Yet another reason we keep a close eye on her 🙂

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