July 19, 2012
Sienna’s friends new and old,
We are so thankful for the outpouring of love and support that we have received for Sienna. We have been supported in thoughtful and creative ways – ways we didn’t even know we needed to be supported! We are so thankful for all of you, from our Texas “family” at Dr Pepper Snapple Group to our amazing family and friends across the globe.
Our past few weeks have had ups and downs. We have been frustrated to see four new flare-up bumps show up on Sienna’s back and chest, bringing her current total to six. Fortunately, three of them have greatly improved and are almost gone. Sienna has remained happy through it all and has thoroughly enjoyed recent visits from her grandparents and her uncle as well as splashing in the neighborhood pool.
We watched “Extraordinary Measures,” a movie starring Harrison Ford about a family with two children suffering from a rare disease. We won’t spoil the movie but we will say that it is truly inspiring and has a happy ending! We highly recommend it to anyone needing a little inspiration.
As far as our battle to help cure FOP, we are proud of our first month’s progress. We have:
- Received almost 13,000 website views generated by over 1,800 visitors
- Raised over $40,000 for the IFOPA to fund research for a cure!
Additionally, Sienna is going to be presented as a teaching case at Dallas Children’s Hospital later this year to help drive FOP awareness in the medical community.
We have planned a terrific first fundraiser for the fall and will be going live with it within the next two weeks. Stay tuned for details!
Lots of love and hope,
Rory, Eric and Sienna