Friends With FOP

Posted by Karen Happy Mother's Day to all the moms out there!  As for me, I got some nice gifts today...  Miranda hurried me out of bed and downstairs, where she and her brother Owen were excited to give me a new fuzzy bathrobe, a box of dark chocolate creams, a book and a little pot with a seed planted in it.  Very cute, and delightful (thanks guys!). Seeing as how it IS Mother's Day, that got me thinking about what it's like to be mothering a child with Fibrodysplasia Ossificans Progressiva.  This is definitely not something I ever expected to do, ...

Posted by Karen Fibrodysplasia Ossificans Progressiva and sports don't go all that well together...  It's tough to be an athlete when any minor bump could lead your body to MAKE A BRAND NEW BONE.  Sigh. And yet, kids usually like sports, to one degree or another.  Also, there are multiple benefits to be had from getting active, especially in team sports,  from cardiovascular health to weight control to camaraderie with other kids to learning to work with others. When you have a child with FOP, you have to figure out a balance between the physical risks and benefits of involvement in sport.  The ...

Today as I draft this blog, it’s Easter Sunday. My kids Miranda and Owen have been up for a couple of hours now, and have long since finished their egg hunt. Later on, we’ll go to Grandma Kirsten’s house for a big Easter meal, and probably eat too much chocolate… ;-) It’s a fun holiday. There was, however, another special day this weekend; something related to Fibrodysplasia Ossificans Progressiva. Yesterday was the first ever International FOP Awareness Day, proclaimed as such by the International FOP Association. The IFOPA created this day as, obviously, a way to bring more awareness to the ...

About 2 weeks ago, we took delivery of Miranda’s brand spankin’ new, awesome bike! So exciting.  Miranda had had been waiting for it for a while, so she was thrilled when it got here. It’s not a typical kids’ bike. We had to order it from a company which makes specialty bikes for kids with disabilities. They sent a sales rep out to Miranda’s school one day to do a test run, and we saw that it could work very well in Miranda’s situation, so we ordered it. The bike, or perhaps I should say trike, comes from the “Freedom Concepts” company ...

Every year, I look forward to reading the annual report of the Fibrodysplasia Ossificans Progressiva Collaborative Research Project. We in the FOP community are extremely fortunate that once a year, our scientists sit down and write a thorough report for the “lay” audience about what’s happened during the previous year in FOP research. The report comes out in the spring, usually in May or June, but this year it came out a bit early - ie, this week! So very cool. If you’re interested in reading the report, go to the website of the International FOP Association at www.ifopa.org and ...

This week, the British Columbia 6 PM CTV News ran a series of clips about rare disorders, each on featuring a different child and his or her family. One of those clips was about us! The clip was short, about 3.5 minutes long, but it nicely summarized the situation of living with Fibrodysplasia Ossificans Progressiva and the challenges it poses. OK, if you’re my Facebook friend, then chances are you’ve already seen this video, but maybe there are a FEW other people out there who’d still like to see it… If you’re one of those people, click on: KAREN’S INTERVIEW. The reason for ...

Just today, a study was released about a major new finding… Dr. Pacifici, a colleague of our FOP researchers, Drs. Kaplan and Shore, has apparently been working with a type of substance which has been shown to stop unwanted bone formation. The importance to the Fibrodysplasia Ossificans Progressiva community is obvious - if turned into a medication, this could be used to prevent FOP flare-ups! Check out the news release at http://www.prnewswire.com/news-releases/potential-treatment-found-for-debilitating-bone-disease-in-wounded-soldiers-and-children-119146519.html. It’s so exciting for me to read these kinds of things. Of course, it’s early days yet, and the researchers have to do lots of work to determine if this ...

This past Sunday, our family returned from a week-long trip to sunny California.  It was a wonderful vacation! We visited San Diego for just over 2 days, and then Anaheim for an additional 3 days. Our objective - theme parks. Sea World, the San Diego Zoo, Disneyland and Disney’s California Adventure Park were on the menu. Anyone who’s done this type of trip knows that all this stuff involves a LOT of walking… So how does that affect a person with Fibrodysplasia Ossificans Progressiva? Honestly, I wasn’t sure what problems our Miranda, who is 6 years old, might have. Her back, ribcage, ...

I am kind of sad today. The last few days I noticed a couple of things with Erin. On Friday while she dressed, she started putting her right leg into her pants and then left. On Saturday when I dressed her, I started with her left and she said, “No Mommy. Do this leg first so it doesn’t hurt.” Oh crap! What now?!? Sunday I noticed that the right side of her chest looked different. Today (Monday morning), I noticed the same side of her chest looked larger. I suspect a flare-up brewing but Erin says it doesn’t hurt nor is ...

OK, no grand theme for my blog today. Instead, I’m going to highlight a few different things from the Fibrodysplasia Ossificans Progressiva community  this past week. First, I am sad to report that Mark Smith, an American man with FOP, died a few days ago. Mark Smith was 46 years of age. I never met Mark, but he has been described as a kind and gentle man. Significantly, Mark was a father - Mark and his wife had 3 kids, all of whom also have FOP. Suzanne McCloskey, who does this blog with me, comments that when she first visited the ...