Friends With FOP

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 ...

Wow, this was a super-exciting week! We did tonnes of amazing things, and… Nope, ha ha, that’s not true. In fact, we did nothing special at all this week. Nada. And so, if I’m trying to think of the ways Fibrodysplasia Ossificans Progressiva impacted our world this week, which is, after all, the purpose of this blog, I’ve got to tell you about everyday stuff… I’ll start with Monday. That evening, I took Miranda to her Sparks meeting (Girl Guides for the age 5-7 crowd). The meeting is just over an hour long, and I waited there until it was done ...

Posted by Karen On Tuesday evening, we got to go to a VERY cool NHL game of the Vancouver Canucks vs. the Columbus Blue Jackets!  The extra-special part was that we got to sit in a luxury box and enjoyed the game, pizza, popcorn, cookies and more all courtesy of the Starlight Foundation.  The Starlight Foundation (www.starlightcanada.org) is a charity which puts on special events for children with serious illnesses and/or progressively disabling conditions, as well as the families of such children.  We qualify as a Starlight family because of Miranda's Fibrodysplasia Ossificans Progressiva, and have gone to some terrific events put ...

Posted by Karen Here goes my 3rd annual Rare Disease Day blog (wow, my 3rd!)... In past years, I've written about International Rare Disease Day.  I've made comments such as the following: - There are 6,000 to 8,000 rare diseases which have been identified.  A "rare disease" is one with a prevalence of less than 1 in about 2,500 people. - About 1 in 10-12 Canadians (and probably Americans, too) has a rare disease. - Most rare diseases have no cure.  That's the case for my daughter Miranda's disorder, Fibrodysplasia Ossificans Progressiva. - Research into rare diseases can lead to medical breakthroughs which benefit people with much ...

Posted by Karen Getting a good bike for my daughter Miranda has been an ongoing quest.  For the first year or so after Miranda's diagnosis with Fibrodysplasia Ossificans Progressiva, I clung to the hope that she'd maintain enough arm mobility through childhood to be able to ride a regular bike.  And so, in the spring of 2008, we bought her a lovely princess tricycle, just the kind all the other 3 year old girls were riding...   ...But even as we were assembling the tricycle, in April of that year, Miranda's right elbow and shoulder were flaring up and starting to fuse.  The picture above ...

Posted by Karen The title of this blog is exactly what I heard on Thursday morning this week, just as I was about to go and tell the kids it's time to get jackets on and head to school.  Those kinds of sounds are never good...  In this instance, I was in the kitchen and the kids were in Owen's bedroom.  I quickly rushed up the stairs and was met by Miranda, bawling at the top of the stairs with blood coursing down the left side of her face.  This was definitely NOT GOOD. I hurried my gal into the bathroom to ...

Posted by Karen OK, so the title of this blog is a *slight* exaggeration...  However, my daughter Miranda DID have a leading role in a video this week.  Very exciting.  :-)  The video was in support of the BC Centre for Ability's "Wee Dance" program. I'll tell you how this all came about.  Early in 2010, before Miranda had started kindergarten, she had the opportunity to be in a dance class for kids with special needs.  The class is run by the BC Centre for Ability, a not-for-profit organization in British Columbia which provides services for kids with various kinds of disabilities ...