Friends With FOP

Posted by Karen It’s Mother’s Day!  And for once, this blog post is about ME.  Me and, you know, FOP… I woke up today to a very excited Miranda, jumping up and down to show me the special card she’d made me in school and give me my gift.  Owen, at age 11, tried to be less worked up, but also wanted to show me what he had made.  There was no breakfast in bed as Miranda hadpromised (frankly I wasn’t holding my breath on that one), but it was a sweet moment. It’s precious to be a mom and experience these things ...

Posted by Karen Two very different events to talk about this week: pulmonary functioning testing and the annual Rare Disease Foundation fundraiser, "Rare Finds"... The lung stuff was earlier in the week; Tuesday, to be exact.  Back in 2007 when my daughter Miranda was first diagnosed with Fibrodysplasia Ossificans Progressiva, it was recommended that when M had been symptomatic for about 5 years, we should have her lung capacity tested.  Rotten old stinky old FOP can cause bone formation in and around the ribs, both front and back, limiting the ability to expand the rib cage.  In extreme cases, it might eventually be necessary to have ...

Posted by Karen I’m ba-aaack…  Time-intensive work project now finished, and I’m ready to blog.  :-) My topic this week is – TEAM SPORTS!  More specifically, the one that involves running around the bases.  Right in the middle of my just-now finished big work thing, softball started up again.  Miranda played the last couple of seasons, and was super excited for it to get going this year.  It’s been underway for a couple of weeks now. [caption id="attachment_2045" align="alignnone" width="225" caption="Look at that excitement!"][/caption] When I was a kid, I hated team sports…  But my daughter is not like me.  She actually WANTS to be ...

Posted by Karen Right now I have an eight year old with Fibrodysplasia Ossificans Progressiva.  We've known about FOP for a number of years, so our family has been evolving and changing as we cope with the disorder in different ways during different stages of   life. We've experienced what it's like to have a toddler with FOP, then a preschooler, a little kid and now we're just edging into the big kid/pre-teen phase.  Other than infancy - we didn't know about FOP until Miranda was 2 years old - the only significant childhood era we haven't experienced yet is the teenage years. I have, however, gotten ...

Posted by Karen It’s Easter time…  This morning, my daughter Miranda and her brother sprang up out of bed, zoomed downstairs and started looking for painted eggs hidden by a certain seasonal rabbit.  ;-) As it happens, it’s also a gorgeous, perfect day where we live.  The sun is shining, there’s no wind and the temperature is supposed to hit almost 20 degrees Celsius.  For me, this feels like the beginning of spring. [caption id="attachment_2035" align="alignnone" width="225" caption="Miranda at the playground yesterday. Check out that blue sky (and lack of springtime Vancouver rain!)."][/caption] Beautiful spring weather paired with Easter also perfectly symbolizes new growth, ...

Posted by Karen Our family arrived home late last night from our long-awaited, fantastic, marvelous trip to Florida.  Such a wonderful vacation...  Where to even begin describing it? Well, how about beginning here...  Our trip was arranged for and funded by the great folks at Make-A-Wish BC & Yukon.  In case you're not familiar with MAW, it's a charity devoted to granting special "wishes" for children with life-threatening illnesses.  My daughter Miranda qualified because of her Fibrodysplasia Ossificans Progressiva.  Many kids with FOP have been granted wishes by MAW, including my co-blogger Suzanne's daughter Erin McCloskey a couple of years ago.  FOP qualifies because it ...

posted by Suzanne Our next installment of "Dinner for FOP" is this weekend.  For this month's dinner, most of the participants are not Facebook users.  Their story would be more pertinent told after the dinner and not before.  Still, I needed to publish something on the Facebook page when I thought of doing a side-by-side comparison of Erin's back. I met most of our guests at a child care training session.  I have seen them at prior trainings but this particular one I attended after I learned of Fibrodysplasia Ossificans Progressiva.  I was officially introduced to one of ladies towards the end ...

Posted by Karen I'm sad to say that my daughter Miranda's time in "The Zone" has now come to an end (probably because I had the temerity to blog about it, sigh).  What is "The Zone"?  A couple of weeks ago I wrote a post in which I explained that The Zone is a lovely long period during which someone with Fibrodysplasia Ossificans Progressiva has no new flare-ups of the condition.  In Miranda's case this time, we had a delightful 18 months. The Zone came to an end earlier this week when Miranda developed a flare-up on her upper left chest.  The flare is in ...

Posted by Karen Thursday of this week was International Rare Disease Day, a day recognized in many countries around the world.  On IRD Day, people with rare diseases raise awareness of the challenges they face.  My daughter Miranda's disorder, Fibrodysplasia Ossificans Progressiva, is most definitely a rare disease - to count as a rare, there needs to be a prevalence of 1 in 2,000 or less, and FOP is 1 in 2,000,000 (still boggles my mind to think of that). [caption id="attachment_1976" align="alignnone" width="300" caption="A small display about FOP which I provided for the RDF event. The information I posted was courtesy ...

Posted by Karen Say you have a baby.  Congratulations!  She's beautiful, gorgeous, wonderful and sweet, and you're delighted to have a healthy little girl.  At some point, though, you realize she does have one small peculiarity...  You notice that her big toes on both feet look a bit unusual.  They're a little shorter than you would expect, and are accompanied by a bunion-like bump on the joint at the ball of the foot.  Maybe (though not necessarily) they're also bent inward a bit, and slightly crossed under the second toe.   You and your doctor find this interesting, but not a cause for alarm.  You carry on, ...