Friends With FOP

Like Alan and Suzanne, who blogged on this subject, I was also very upset to hear about an injury suffered by our young friend. For anyone who didn't read those blogs, there's a boy who is age 13 and has Fibrodysplasia Ossificans Progressiva, just like Miranda and Erin. A couple of days ago, a classmate intentionally struck our friend's knee with a drum mallet. The boy had much swelling as a result of the hit, and now his family fears an FOP flare-up which will lock his knee. Hearing of this reminded me again that when you're dealing ...

Safety is our number one priority with Erin (as with Miranda).  We do want we can by instilling safety measures to reduce the likelihood of a serious fall that could lead to permanent restriction/damage to Erin's body.  Not only does Erin have her Halo helmet but a big part is communication with those who take care of her.  Before Erin's preschool started, both Alan and I met with the staff of the school to talk about FOP and what precautions were needed to protect Erin.  I've blogged about this before and even posted "Erin's Medical Issues" here on the site.  ...

2004 was a very good year for our family.  It started off a bit rocky when we learned that our oldest son was struggling with ADHD, some Autism symptoms, and was diagnosed being developmentally delayed.  We had planned to move to Nashville, TN to be closer to family and to take in my ailing mother.  The movers were scheduled and we had a date for the big haul to go across the country.  Then we had a meeting with the school district about Brennan.  The school district recommended that we would make this our last move for Brennan's sake.  He needed ...

Written by Malcom Munro When four-year-old Miranda Friz plays outside with her little chums, her mom makes sure Miranda wears her protective headband.  None of the kids ask why she wears it.  Mom Karen Munro and dad Pete Friz told moms and dads in their street about FOP and why Miranda needs to be extra careful.  Miranda should avoid very physical games as well bumps and bruises, parents told their kids. The kids heard and understand. Miranda's popular "big brother" Owen at only seven years is often touchingly protective.  He understands. None of this seems to impress Miranda very much - ...

Sometimes I wonder what other people think life is like with a child who has Fibrodysplasia Ossificans Progressiva.  Of course, the purpose of this blog and website is to focus on FOP, and how it affects Miranda and her friend Erin, and Suzanne and I both try our best to convey a sense of the experience.  However, the fact that Suzanne and I operate this website doesn't mean either of us wanders around with FOP on the brain 24 hours per day...  Far from it. OK, let me backtrack - I shouldn't speak for Suzanne, since she's more than capable of ...

On the weekend, Pete and I took our kids to the Vancouver Aquarium, and after that for a picnic lunch and fun at a playground in Stanley Park. It was a cold but sunny day, and Miranda had a great time running around (clutching her squeaky beluga toy the whole time). Her cheeks got nice and rosy, and she got some good exercise. However... Once again my FOP mom stress-o-meter kicked into high gear. Why, oh why, did Miranda have to think it was so much fun to climb up on the big boulders surrounding the playground? ...

February has never been a good month for our family.  The weather is horrible and all the little bug-a-boos seem to make their way in and infect the family and daycare.  Now when someone becomes sick, there's a whole new fear factor involved.  It's now a known given that those living with FOP can have nasty flare-ups from getting sick.   The flare-ups indicates the FOP is progressing by new bone growth and the possibility of new limitations.  All FOP patients are told to get an annual flu vaccine since the flu is known to further FOP progression.  Some FOPers take the ...

There will be a fundraiser for Fibrodysplasia Ossificans Progressiva (FOP) at Oz Pizza in Fairburn, GA.  Here are the details if you are interested in going. ************************************************************************************* Come join me at Oz Pizza in the town of Fairburn where I am doing a 'Fundraiser' for Fibrodysplasia Ossificans Progressiva (FOP) and to acknowledge the 'Rare Disease Day' for which I have been named the Patient spokesperson. Oz Pizza is giving 20% of all proceeds received between the hours of 5-9 p.m., Tuesday, February 24th to the IFOPA. Seating is limited and therefore I am asking my guests to RSVP, ASAP...as I need to give each ...