Guess what? I’m blogging! I am celebrating my debut and the $18 purchase of my new home, raremom.com, with a Q&A session with myself.
I have focused on raising awareness and funds for F.O.P. (Fibrodysplasia Ossificans Progressiva) since Sienna’s diagnosis about a year ago. And we have come a long way, most notably launching www.siennasflowergarden.com.
For various milestones, I’ve relied on Facebook to share my messages and get the word out. I generally had more to say than was practical for Facebook, but I posted it there anyways. I like the format of a blog because I can share more details about our life dealing with an ultra-rare disorder and how we cope: the laughter, the tears, the hope. Bonus – maybe sometimes I’ll rhyme. But no promises on that.
FYI – I have included some of those previous Facebook posts here so new friends can get caught up quickly!
What is FOP?
FOP is an extremely rare and debilitating medical condition where bone forms in muscles and other soft tissues of the body. During a flare-up (characterized by large swellings), extra bone can form across the joints, restricting movement. It is a progressive disease, meaning it gets worse over time. Many adult patients have had to choose whether to spend their lives sitting or standing, essentially frozen in place. Some have called it a prison of bone. It affects 1 in 2 million people, with about 700 confirmed cases worldwide.
FOP sounds terrible, is this going to be depressing all the time?
Nope! For one thing, Sienna currently has very few mobility restrictions and is happy almost all the time. It’s impossible to be depressed around Sienna. She is only unhappy when I am telling her to slow down, go to sleep, take a bath, or not have ice cream for breakfast.
I let her have frozen yogurt for breakfast once and that opened up a whole can of worms. OK, maybe it was twice. All right, it’s twice a week now… But it’s greek yogurt! And the nutrition in frozen greek yogurt is the same as in regular greek yogurt! Stop judging!
Also, Sienna’s favorite things are flowers, ladybugs and butterflies. Expect those things to make regular appearances here.
What’s the point of this blog?
I remember the initial days after Sienna’s diagnosis well. Our entire family glued to our computers, looking for information and glimmers of hope. The first FOP family I connected with was a mom in the UK. I saw a picture of her daughter on a stage at some sort of a performance and that was the first time that I felt real hope again. She was happy, she was a regular kid participating in a normal life.
I hope that by sharing Sienna’s adventures, we can provide that hope for other families as well – whether they are newly diagnosed with FOP, dealing with another difficult diagnosis, or just regular people who are interested in getting involved.
What is Sienna’s future going to look like?
I don’t know yet, that will depend on what she wants to do. But her future will be awesome for many reasons, the most important of which is that researchers are closer than ever to finding effective treatments and a cure! We have real hope that a promising drug, or maybe even more than one drug, could be in clinical trials in the very near future.
How can I help?
A treatment for FOP is in the home stretch! What the FOP community needs most right now is awareness and funds for research. Please share http://www.siennasflowergarden.com or this blog with your friends, families, coworkers, anyone!
All donations through http://www.siennasflowergarden.com go directly to the International F.O.P. Association (IFOPA) to fund the team of researchers at Penn Medicine and are restricted to fund research, in honor of Sienna Otto, towards effective treatments and a cure. The IFOPA is a registered 501(c)(3) charitable organization.
Anything else you want to add?
No promises on frequency of blog posts. I might have a lot to say one week and then nothing to say for a month. Apologies in advance.
Also, good questions, self.
Thanks, self, pretty good answers!
Hi-five me, self! Hmm… I guess that’s just clapping…
So, here we go! Taking the plunge into blogging! Thanks for joining me!