Walk for FOP 2017 – it’s coming up…

Posted by Karen - June 25th, 2017

Hello again! Did you miss me? I was gone for a few weeks while moving to our new house, but here I am again, raring to go…

And now, fanfare please, I am excited to announce the beginning of our annual fundraising campaign for FOP! This will be, what, year number 4, I think, for this event? On Sunday, August 6, we will be doing the Walk for FOP in Calgary, Alberta. This is a joint effort between the Friz/Munro and Degenhardt families. The Walk is in honour of my 12-year-old daughter, Miranda, and our friend Kathleen, a young woman who lives in Saskatchewan, both of whom have Fibrodysplasia Ossificans Progressiva. We do the walk in Calgary because both the Degenhardts and Munros have extensive family connections in the area.

If you’re in the area on August 6, we hope you’ll join us in beautiful Baker Park for a lovely walk, followed by a picnic of hot dogs, fruit, chips, and goodies. It’s a really fun time, if I do say so myself.

Kathleen and Miranda, 2 Canadians with FOP, at our 2015 event.

Kathleen and Miranda at our 2015 event.

Regardless of whether or not you can attend, though, please consider a donation to our cause. To make it as easy as possible, we even have a website! Go to www.walkforfop and click on “General Donations”.

So, why do we do this event? In a nutshell – because FOP is an evil, horrible thing to experience, and there is as yet no treatment for it.

Let me tell you a bit about how FOP has affected my daughter over this past year… The really nasty stuff started in January 2017. One day, Miranda realized that her left knee hurt and she was having trouble moving it. That was the beginning of an odyssey which has stretched out over 5 months and is still going strong. Those early symptoms became a full-blown FOP flare-up which first affected the left knee, then moved down the calf muscle, back up to the knee again and into the thigh, and finally into the inner leg and hip. Right now, Miranda still has painful areas on the outside of her left hip and inside of the thigh. Functionally, her left knee is now almost completely locked in a permanent semi-bent position, and her left hip is cocked forward so that her left leg is always out in front of her. If Miranda wants to walk or stand, she now has to be slightly bent over, because if she stands up straight, her left foot won’t reach the floor and is about 6 inches up in the air in front of her.

While getting to this point, my poor girl experienced terrible distress. There was a period of time where getting in and out of a car was horrifically hard, and riding in a vehicle for more than 10 minutes was impossible due to excruciating pain. Sleeping at night has been difficult, because almost every position Miranda adopts eventually becomes too uncomfortable to sustain. On top of all that, she can no longer sit in a regular hard-backed dining room or desk chair and must be semi-reclined, which limits where and how she can eat, do schoolwork, and relax. We have had to buy special angled “perching” stools, as well as a recliner with a remote control which lifts the person out of the chair. And as for walking? Miranda now requires a cane for anything more than walking around the house, and her walking speed is much decreased. She can no longer navigate hills or anything more than a few stairs, which means she hasn’t walked to school since January (and that’s saying a lot, because until recently we lived in a house a block away from school). If we go out anywhere requiring longer walking, Miranda now has to use her manual wheelchair.

On top of all of this, Miranda has experienced intermittent gastrointestinal problems (not uncommon for people with FOP). This has gotten worse with the ongoing leg flare-ups, and I am convinced there’s a connection between inflammatory activity in the body and stomach upset. We’ve been working to get this under control, and am relieved to say I *think* we’re starting to make some headway.

In a nutshell, it’s been a really difficult past few months for Miranda. But compared to what our friend Erin McCloskey has been going through (the Erin Kate of this website), Miranda’s experience has been trifling and minor. Our dear friend Erin, who is about 6 months younger than Miranda and lives with her family in Seattle, has been hospitalized since April and expects to be in hospital until at least September. Unfortunately for Erin, she has struggled mightily with the ability to gain weight over the past few years (this problem affects a small but distinct minority of people with FOP). This has resulted in Erin having very low body weight, and basically no reserves to rely on when she gets sick. She caught a simple virus in April, and when she spiraled downhill quickly, found herself in hospital needing to be intubated. Intubation proved very difficult due to Erin’s scoliosis (another common problem among people with FOP, including Miranda), but was ultimately accomplished. Erin had to stay in the Pediatric Intensive Care Unit (PICU) while her body fought off the virus and dealt with increased levels of CO2. She remains weak, and her health fluctuates. Physicians have recommended a permanent tracheostomy before Erin can go home, because of the likelihood she will again become sick and need immediate oxygen. Because of Erin’s complex airway – thank you very much, extra FOP bone – Erin has to remain in hospital until top specialists can figure out how to create an effective and successful trach. This experience has been an absolute nightmare for poor Erin and her family.

My super-duper rare girl and her equally rare friend in November 2015

Erin and Miranda, late 2015

 

By coincidence, an adult man with FOP in the USA, J, has had a very similar experience to Erin and has also been in hospital since April. In his case, he already received a tracheostomy.

The short and long term effects of FOP are catastrophically awful. For Miranda, Kathleen, Erin, J, and all our other friends with FOP, an effective treatment for FOP is crucial. I’m glad to report that things are going well in that direction – two pharmaceutical companies have medications in clinical trials, and a number of others are hot on their heels – but we’re not there yet. Only continued research into FOP and how it works will get us to the finish line.

We need your donations, all of which will benefit the Canadian FOP Network. The CFOPN is a small but effective charity with very low overhead which financially supports FOP research.

If you’d like to donate to our cause, please go to www.walkforfop.com and click on “General Donations”. Or, if you prefer to donate the old fashioned way, contact me and I’ll be happy to advise where you can send a cheque.

Thanks ever so much for your support!

 

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