When I think of bikes, I think of summer fun, riding around the neighbourhood, warm sun, excercise, friends and good times.  All great stuff for kids.  However…  Riding a bike does have its risks.  Kids do fall off their bikes, and do injure themselves. 

So where does that leave a child who has Fibrodysplasia Ossificans Progressiva?  Isn’t riding a bike too risky?  Maybe yes, maybe no…  I know some adults with FOP who rode regular, ordinary bikes during their child and teen years.  I know of one adult in particular who, despite having a fused hip since age 12, rode his regular bicycle (and with no helmet! that was back in the day) all the way through his four years at college.  However, I’ve also learned that most children with FOP who ride bikes used “special needs” models, with enhanced safety features to minimize falls and injuries.

We had a regular tricycle for Miranda last year.  She enjoyed it a lot.

The picture above shows Miranda shortly after we got her trike put together in April of 2008.  She was VERY excited.  It was pretty safe too, with a seat belt and parent push-bar.

What you can’t tell from this picture, though, is that Miranda’s (then) “good” right arm was just in the beginning of a flare-up that mostly fused her right elbow in a bent position.  She still managed to ride the trike, but it was awkward.  Her arm limitations caused her to involuntarily turn the front wheel to the side, so she had a hard time riding in a straight line.

Moving on to spring of 2009 - it seems Miranda grew a lot in the past year.  She sat on the tricycle early in the spring, and it was readily apparent that she’s far too big for it now.  And, since the princess tricycle was the biggest preschooler option in any of the usual bike stores around here, we knew we were on to the next step.

As it happened, the question “regular bike or specialty bike?” was one we didn’t have to decide.  With Miranda’s limited shoulder and elbow movement, she can’t hold her arms in the proper position to ride an ordinary bicycle.  Accordingly, we looked at some options, and went with one that came highly recommended by others with FOP: the Banana Peel by the Trail Mate company.  More particularly, we got Miranda the smaller kids’ version, the Mini Peel.  (I think its called “Banana Peel” because the seat is yellow and looks kind of like a peel.)  The new bike arrived a couple of weeks ago.

Here are a couple of pics of Miranda on her new bike…

As you can see, this bike is actually a form of recumbent tricycle, and sits very low to the ground.  I like the nifty handle on the front, which allows a parent to pull it easily (useful when the child isn’t on it and you want to move it to another location).  I also like the tall flags which attach to the back -  here you can see the sticks of the flags, but not the flags themselves.

I’m happy with the new bike, and Miranda was pretty delighted to try it out (OK, so it’s mostly just because it’s NEW, and HERS, but still…).  However, we could tell right away that even this one wasn’t going to be perfect without some alterations.  For instance, Miranda told us almost immediately that it was “ouchy” on her back - probably from pressure points caused by some of her FOP bones.  That was easily rectified with a piece of foam placed behind her back.  Our physiotherapist, Andrea, improved on that after a few days with a firm foam attachment which we can place on the seat and secure with velcro (the pictures show the original temporary foam).

We also could see right away that Miranda wouldn’t be able to move her hands to hold the handles, which are located on the sides of the seat.  At first we weren’t sure if that would matter - maybe she didn’t need the handles?  However, I put an inquiry out on our FOP e-mail group, and our good friend Brooke from Ontario, an 8 year old girl with FOP, told us via her mom that you most certainly do need the handles, because they assist with steering.  You steer the Banana Peel by shifting weight to one side or another, and apparently if you get going a bit faster, you can lose control if you don’t have handles to brace yourself.  THAT is an important tip, for sure…  Luckily, our occupational therapist seems to think it will be a fairly easy matter to devise handles which will attach to the back of the frame on a hinge, and then swing up over Miranda’s shoulders and down in front where her hands are located.

So, the Mini Peel is a work in progress, but I’m confident we’ll get it all sorted out.  I’m really glad Miranda will have the opportunity to enjoy all the fun of summer biking, despite her FOP.

(this blog originated on www.friendswithfop.com)

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