Archive for May, 2011
Ride to Cure FOP 2011
May 29th, 2011
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In 2010, a gal by the name of Vanessa Herce did an amazing fundraiser with all proceeds going to the Canadian FOP Network. Vanessa, whose sister Valerie has Fibrodysplasia Ossificans Progressiva, rode her bicycle along with a team of other riders from Toronto to Niagara Falls, Canada. In so doing, Vanessa raised over $30,000.00 for the FOP cause!
I'm a member of the board of the Canadian FOP Network, and we were honoured that Vanessa did this incredible event and donated the funds to the CFOPN. We were even more delighted when Vanessa agreed to let the CFOPN partner with her ... Quality time and Miranda’s bike
May 22nd, 2011
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Posted by Karen
As you may know, we recently got a new, specialized bike (actually a tricycle) for our Miranda. She can't ride a regular bike because her Fibrodysplasia Ossificans Progressiva has resulted in extra bone which significantly limits her shoulder and elbow movement, and she can't reach the bike handles (plus a regular bike is a risk for FOP flare-ups if Miss M falls off).
When we first set out to get the bike, I had modest goals in mind. I just wanted Miranda to have an opportunity for some exercise, because there aren't a lot of safe options open to her - ... Handicap Parking Spaces are for the Handicapped
May 22nd, 2011
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Every Saturday we take Erin to play Challenger Baseball with others who are physically challenged.
On the way there we had to stop to do a few errands. We pull into the parking area, and there is a car in front of us, slowly creeping along. We see there is only one handicapped parking spot available, and this small car blocking us pulls into it.
We had to park further away, but I kept an eye on the car who took our spot. The young girl in the car was going through her purse, and seriously took a good five minutes before ... A fundraising lunch
May 15th, 2011
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Posted by Karen
I have a really fantastic employer. The firm of Stephens and Holman, Personal Injury Lawyers, has been very supportive of our family on our journey with Fibrodysplasia Ossificans Progressiva.
When Miranda was first diagnosed with FOP in April of 2007, at age 2, my boss, Simon Holman, listened carefully and considered my plan to radically alter my work situation. I pitched an arrangement in which I would work mostly from home (close to where Miranda would be cared for during the day, in case of emergency) and on a "permanent contract" basis, instead of as an employee, with reduced hours to ... Skinned Knees and Elbows
May 14th, 2011
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La Nina has been kicking butt all over the country and Seattle has not be left out in the cold. The last La Nina season we had record snow accumulations. This time around it’s been extra wet. Luckily we have had a few beautiful, sunny days. Those days the neighborhood is jumping with all the kids playing outside. Over the winter months several new families with kids moved in. For the very first time, I have allowed Erin to out to play unsupervised. In the past we have propped the screen door so she could come in and out and ... On Mother’s Day, and being an FOP mom
May 8th, 2011
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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, ... FOP and sports
May 1st, 2011
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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 ... 
