Friends With FOP

Posted by Karen When my daughter Miranda was first diagnosed 4.5 years ago with Fibrodysplasia Ossificans Progressiva, one of the (very many) concerns I had was about her ability to enjoy life.  How could Miranda ever be a happy child with this horrible genetic monster hanging over her shoulder and affecting her every move?  In my extreme despair, I pictured a gloomy life, with Miranda being in constant pain and watching other children do everything she couldn't. Thank goodness the reality is nothing like I had feared. As I've blogged about many times before, Miranda is a happy, fun-loving girl who does lots of ...

Posted by Karen A few days ago, I got in my car to drive to an appointment.  Just before heading out, I checked my Blackberry for e-mails, and I saw a message from the International FOP Association (IFOPA) with a title that started my skin tingling: "Genetic Technology Breakthrough".  I hurriedly clicked on it, and learned that our beloved scientists at UPenn have figured out how to STOP Fibrodysplasia Ossificans Progressiva. (!!!!!) Even before I had a chance to read any further, I knew this was going to be a big, BIG deal.  This appeared to be probably the most important step to date in FOP research.  I ...

Posted by Karen Marie Hallbert lives in Sweden with her husband and 2 children.  Her younger son, Hugo, is age 13 and has Fibrodysplasia Ossificans Progressiva.  Marie has done so very, VERY much to help families dealing with FOP, and I'm privileged to say that she's my friend.  One of the many parents she's supported over the years gave her the name which is the title of this blog.  I really want to tell you about Marie, and especially her latest accomplishment... First, a bit of background.  Marie's son Hugo was diagnosed with FOP at almost exactly the same age as my ...

Posted by Karen It's a standard thing with kids that as time goes by, they have more skills, more strengths and more abilities.  A 2 year old probably won't go down the twisty slide at the playground, but by age 3 is raring to try it.  The child's parent watches and provides guidance, sometimes stopping the little one from doing things too risky and other times encouraging him or her to try new things. The situation is the same when the child has Fibrodysplasia Ossificans Progressiva, but the balance point between appropriate activity and too risky isn't the same as for a ...

Posted by Karen My daughter Miranda has Fibrodysplasia Ossificans Progressiva (FOP), and I've blogged about that from many different angles.  Dealing with FOP is a significant  part of  life with Miranda.  However, it's not the only part.  It's not even the most important part. Once, many moons ago, I blogged about the kid behind the FOP.  That was a while ago, though, so I thought it would  be fun to do that again, and tell you 12 random things about Miranda.  Things that AREN'T about FOP.  In no particular order... 1. When Miranda wakes up every morning, almost the first thing she asks me ...

Posted by Karen Last week I blogged about different things Miranda's been doing recently, and I mentioned that she started piano lessons.  Since then a few people have been asking me about this. I think a few folks have been wondering - how is Miranda going to play the piano with her arms as they are?  It's true that Fibrodysplasia Ossificans Progressiva has messed up my gal's arms.  Her first FOP flare-ups at age 2 fused her shoulders almost completely in place, and within a year of that, FOP bone locked her right arm in an "L" postion and she could no ...

Posted by Karen As that TV commercial proclaims, "It's the most wonderful time of the year!"  (ha ha ha)  Yes, it's return to school time...  Miranda has now been back in school for 2 weeks.   It's been so far, so good in grade 1. I think we worked out a lot of the kinks last year.  The teachers know what to do with Miranda in gym class (a "no run zone" and activities on gym mats), and an educational assistant (EA) helps Miranda with reaching/bathroom/safety/ other things she can't do.  We have had a bit of adjustment as Miranda tests the boundaries of the new EA...  For ...

Posted by Karen About two weeks ago, we discovered that Miranda was at the beginning of a Fibrodysplasia Ossificans Progressiva flare-up.  We were sad to find this out.  She had gone a year and 2 months with no new swellings; why couldn't the lull just continue?  (may as well ask why the sky is blue...) This wasn't the shoulder flare-up we had feared a few weeks ago.  The abrasion on Miranda's right shoulder just healed the way small scuffs should, with no further trouble.  Rather, this was a swelling on Miranda's abdomen. It all began two Mondays ago when I was working in my home office ...

posted by Suzanne I have been overly anxious for a while now.  In August Erin started a string of appointments at Seattle Children's Hospital.  I'll break it down by clinics. Rehabilitation Medicine The occupation therapist and physical therapist measured and recorded Erin's range of motion.  The numbers don't mean much to me however they pointed out that she is walking with a slight limp.  Her left leg is longer than her right.  Initially there was talk about wheelchairs but we weren't convinced at that time she needed anything more than the pediatric push wheelchair we have in the garage.  We agreed to a ...

Posted by Karen On Friday of this past week, we got a very pleasant surprise. As you may know, we recently did a major fundraising drive for the Canadian FOP Network's "Ride to Cure FOP".  Back in May when we decided to do the event, I sent an e-mail far and wide, asking everyone I could think of if they would donate to our cause.  One person I e-mailed was the director of Miranda's old daycare, the Forest Grove Childcare Centre.  I thought maybe someone at the centre might consider making a modest donation.   Miranda had gone to their centre for about 2 years, ...