Summer activities and FOP

Posted by Karen - August 16th, 2015

I understand that summer is over or almost over for kids in some places, and it’s back to school… But not here in Burnaby, BC, nope. Our school board always starts school on the first Tuesday after Labour Day, which this year is a very late September 8. As such, my kids won’t be returning to school for another 3 WEEKS! (Aside, and not really the point of this blog, but a 10 week long summer is too long, IMHO.)

This means, of course, 3 more weeks of sorting out summer activities to keep ‘em busy. For my 13 year old son, Owen, that’s not a hard thing – he can do pretty much anything he wants to (physically, that is). For my daughter Miranda, age 10, however, fibrodysplasia ossificans progressiva makes summer activities a somewhat trickier affair. FOP limits what she can do because of physical restrictions, especially with Miranda’s very limited arms, and also because of safety (i.e., the risk of falls or other traumas which could provoke FOP flare-ups).

Because of good ole’ FOP, some things are just not possible. Summer sport camps? No – she couldn’t do almost any of the sports, and besides would need a personal attendant. General summer day camps? Again mostly no (with one important exception), because Miranda would need an attendant and such camps aren’t generally set up to provide that, or else we’d have to pay someone to go along with her. Playgrounds? Pretty much no as well, because the current crop of redesigned playgrounds require lots of arm swinging and so forth (not even remotely possible for my girl), and also, in fairness, because at age 10 she’s starting to outgrow them.

You know what, though, the list of what Miranda can’t do in the summer time is still mercifully short. It actually hasn’t been too hard to keep Miss M busy, and I’m thanking my lucky stars for that.

On the macro level – Miranda was actually able to do a week long day camp at our local university. And, ta-da, THIS camp actually WAS able to provide a volunteer to help her! Turns out those summer camp jobs are highly coveted for university students, meaning there’s a big surplus of volunteers in any given year who work for free (with the hope of getting in good for a paid job the following year). Apparently it’s a simple matter for the camps program to simply assign a volunteer to any day camp child needing help for accessibility purposes. Score! Miranda has another such camp coming up before school starts.

On the micro level, in terms of specific activities, Miranda’s hand’s down favourite is swimming. Miranda would swim just about every day if she could. And, luckily for her, we have a swimming pool in the townhouse complex where we live. I don’t even always have to go in the water with her; sometimes I sit and watch while Owen and Miranda swim their hearts out. (NB – I am very fortunate also to have a flexible work schedule which allows me to rearrange things to do summer activities with my kids.)

O and M in the pool, while I sit ON THE SIDE.

O and M in the pool, while I sit ON THE SIDE.

On our recent summer vacation, we did a number of different activities which worked for Miranda as well. Take, for instance, mini-golf… This doesn’t require a great deal of arm movement, so Miranda can do it just fine.

Miranda mini-golfing with her cousin Ella.

Miranda mini-golfing with her cousin Ella.

Of course, checking out tourist attractions is always fun, too. We took along Miranda’s manual wheelchair in case she got tired, but in fact she REFUSED to use it and ended up walking all around the Calgary Zoo.

NOTE - not real penguins, ha ha.

NOTE – not real penguins, ha ha.

When the weather’s not quite as nice, bowling is a good activity. Miranda bowls with one of those metal ball-guide things where all you have to do is push the ball down from the top. 5 pin bowling is the easier option, because of the smaller bowling ball.

Using the ball guide.

Using the ball guide.

Miranda with her good luck ball!

Miranda with her good luck ball!

Last but not least, no summer would be complete without at least one opportunity for face/body painting. Miranda picked up a cool cheek and hand combo at the recent Rare Disease Foundation annual summer family picnic.

IMG_0221 IMG_0224

So, 3 more weeks ’till school, 1 of which is already figured out. I think we’ll manage alright, despite a handful of FOP limitations.

 

PS:

1. Still want to donate to our summer FOP fundraiser? Our event was August 2, but have no fear, because our website will still be open for donations until the end of August. To donate on-line, go to www.walkforfop.com. Or, contact me and I’ll tell you how you can send a cheque.

2. If you have FOP, are age 15 or over and have a new flare-up on an arm, leg, hip or shoulder, you may qualify to take part in the current Phase 2 testing of the potential FOP medication Palovarotene. It requires some short term travel to one of the testing sites, but all of your travel and accommodation costs are covered. For information on how to participate, click here: http://www.ifopa.org/drug-development/clementia-palovarotene-clinical-trial.html

3. If you have FOP, you may be eligible to take part in Clementia Pharmaceuticals’ “Natural History Study”, a non-interventional study with the aim of learning more about the natural progression of FOP. For information on how to participate, click here: http://www.ifopa.org/drug-development/clementia-fop-natural-history-study.html

4. Finally, last but not least, the IFOPA’s FOP registry is now open to any person with FOP or their caregiver. This project will provide invaluable information about FOP to researchers working on treatments and a cure for FOP. For information on how to participate, click here: http://www.ifopa.org/registry.html

 

No Comments so far, be the first to add one.



Leave a Reply