One year ago today Alan and I received the call from the genetic counselor. Erin’s DNA test has come back positive for FOP (Fibrodysplasia Ossificans Progressiva). I know I had convinced myself that the swelling could be some type of a lymphoma issue. I still remember the day when Alan said, “I hope this isn’t [...]
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.Â
So where does that leave a child who has Fibrodysplasia Ossificans Progressiva? Isn’t [...]
I had a funny experience recently that I’ve pondered a lot. Â
Our occupational therapist and physiotherapist suggested we apply for special disability benefits for Miranda from the Province of British Columbia. These aren’t income supplementation benefits, but rather benefits “to help families with severely disabled children pay for medical and rehabilitation equipment.” You’ll note I italicized the [...]
This past weekend we went to the first ever Canadian FOP Conference and Family Meeting. I had been looking forward to it for a long time, and I’m happy to say it was a GREAT event.
We flew out to London, Ontario on the afternoon/evening of Thursday, May 28. The flight was 4 hours, [...]
“Mom - how many more days til we go on the airplane to London?” I hear this several times a day from both my kids.Â
Miranda and Owen are excited because on Thursday of this week, we’ll be flying to London, Ontario to attend the first ever Canadian FOP Conference and Family Meeting. The conference begins Friday night, [...]
“Better treatments for FOP are not just a dream - they are now likely, and a cure is a distinct possibility.” - The Eighteenth Annual Report of the Fibrodysplasia Ossificans Progressiva (FOP) Collaborative Project, page 64.
There are lots of terrible things about FOP. However, as rare diseases go, there’s one really, really good thing about [...]
Steve McGraw from the Starlight Children’s Foundation invited me to help him with a radio spot that features his charity organization. The piece focuses on what the Starlight Foundation does for families with chronically ill children. I was there to share Erin’s story, how it has affected our family, and how the Starlight [...]
Well, it finally happened…Alan’s department was let go yesterday. All last week, the remaining executive employees were in closed door meetings. Word got out that the company did not have enough funds to survive through the end of June. Apparently with “start up” companies, the first two departments to be axed is Marketing and Human [...]
Starlight Children’s Foundation of WA asked for a family to accompany the executive director, Steve McGraw in an interview for “Good In Your Neighborhood.” It’s a public affairs show that airs on Sundays from 6AM - 7AM. Steve and Alan will be taping the interview this Thursday morning. So if you’re up bright and early [...]
My husband, Pete, is out of town on business right now. So, I’ve been solo parenting this week.
Pete has to periodically take trips out of town for a few days each. This time he happens to be in Alaska… His trips typically take a break during winter, and then start up again in the spring. [...]
