Friends With FOP

I lost count on how many times I told someone that I felt like we were living a story on Mystery Diagnosis.  Lo and behold I received an email today from an associate producer from Mystery Diagnosis.  He asked permission to use some of Erin's pictures for a show they are putting together about FOP.  I was thrilled to give permission and even more thrilled to know FOP will be getting some major air time. The FOP episode will feature Ashley Kurpiel who lives in Peachtree City, GA.  She was diagnosed at 3 1/2 years old (she's 27 now).  Back then very ...

In Dr. Kaplan's upcoming annual report, there is a segment dedicated to the use of muscle relaxants in FOP patients.  Today I got a call from Rehab Medicine Clinic at Children's Hospital.  She'll be seeing a doctor in August who is acutally aware of FOP (surprise!) and treats kids with Cerebal Palsy.  There are types of muscle relaxants that have been helpful with relatively healthy muscle tissue that has shortened (as in Erin's neck muscles).  There hasn't been a whole lot of studies with muscle relaxants between flare-ups but it's worth talking to Rehab Medicine about the probability of using them. I ...

Yesterday we had a long appointment with Dawn. We went over the "what not to do" and "what is okay to do." Since information on FOP is all online Alan and I knew most of the information. However we learned a few things. Alan asked about treating FOP with Celebrex. Basically Celebrex has the same functionality as the Naproxen that we're giving her. Doctors do not like to prescribe Celebrex to children b/c of the potential side effects. We thought that Celebrex would be able to stop blood cells from forming which would prohibit any additional bone growth (original bone and ...

We have tentatively scheduled a garage sale for August 8th and 9th.  All proceeds will go towards Erin's treatment and medical bills.  If you are in the Seattle area and would like to donate stuff you don't need anymore, please feel free to contact me.  We will take it off your hands and store it.  As we iron out more details I'll be sure to let everyone know.  Until then, we are accepting donations to sell.�

My brother Mike was here at the house when we got the news that Erin's test came back positive for FOP.  He was a great help...he cooked a fabulous salmon dinner and spent time with the boys.  Thank you, Mike!

Today was an extremely tough day.  First and foremost, Dawn (the genetic counselor) called today around 5:30PM.  She confirmed that the lab saw in Erin's DNA the mutated gene associated with FOP.  No matter how much I could have prepared myself, the sadness is overwhelming.  I honestly feel that Erin is being robbed of all opportunities that a child should have.  Why do I feel like this is a death sentence?  She won't "die" from FOP but still... The good news is Dr. Kaplan wants to see Erin.  By the grace of God, our accountant stopped by today at 4:00PM to ...

Dawn from Children's Hospital Genetics called today.  Erin tested positive for the FOP gene.

Alan and I have had the opportunity to talk to two separate families who are also living with FOP.  Alan talked to Sarah Steele and her mother, Marilyn, over the weekend (a link to an article about Sarah is on the "FOP Web Links" page).  He was so inspired after talking with them.  Sarah is 23 years old and has graduated from the University of Washington.  She lives in Redmond which is just down the street from us.  I think Alan would be a better person to blog about his conversation.  However I can attest that he was enlightened after their ...

We had a pretty good weekend.  To start out, on Friday morning, Erin's swelling had subsided on her back.  However we can now clearly see the new FOP bone that developed.  It looks very similiar to all the photos we've seen of FOP patients.  We'll take a photo of her back an post it here.  The good news is is that she is no longer in any pain.  She stop taking the Aleve and Prednisone for now. I think Erin has gone through another growth spurt.  I am wondering if the growth spurt brought on this last flare-up (a question for the doctors).  ...

Still doing more research.  Many people with FOP don't have extensive websites, but I found one that has EXTENSIVE information and tons of pictures of their son growing up. The site (FOP Sweden) is in Swedish, but you can read the English translation by clicking here. The absolutely amazing thing is that this child has the exact same protrusion at the back of the head as Erin did... you can see it in their photo gallery. They have documented through photos all of the unusual lumps and swellings, which is exactly what Erin is going through.  It is interesting to see what we're ...