Friends With FOP

I had a question asked yesterday about why we chose to put Erin in a helmet.  When I read the email I had to do a double-take because it was then did I realize that we had to make several decisions within the first few weeks of her diagnosis.   In my mind I was barely functioning at that time and Alan and I had to make decisions fairly quickly.  The person who emailed me provided a different perspective on the helmet issue.  Ever since reading and responding to the email, I haven’t been able to get the conversation out of my head.  I guess that’s a good topic for me to write about.

The person who contacted me is an adult living with FOP (aka “FOPer”) who saw Erin’s and Miranda’s pictures from this past weekend.  She wanted to tell me a FOPer’s perspective.  She said that it’s bad enough that a FOP body changes dramatically and causes enough stares and looks.  Why would we put her in a helmet that could possibly cause more grief for Erin?  I agonized over the helmet issue.  As Alan and I have done since Erin was born, we go off of doctors’ recommendations.  Before the diagnosis, some decisions we made weren’t the best for her.  Post diagnosis and with Dr. Kaplan’s treatment guidelines, we knew that she would need the helmet.  He specifically states that a helmet is highly recommended for little kids.  FOPers who were diagnosed 20 or 30 years ago, didn’t have the IFOPA or the expertise of Dr. Kaplan.  Fortunately for those who are diagnosed within the last decade have the knowledge and experience of not only Dr. Kaplan but those who have been living with FOP for a long time.  We (meaning the entire FOP community) are lucky to have a network like we do.  The babies/children who are diagnosed today are handed years of research and stories of other FOPers.  So far Alan and I have met Sarah Steele and Sharon Kantanie who are both restricted to their wheelchairs.  Both families have told us that when they were diagnosed, there was no IFOPA.  Even trying to find a doctor to monitor the FOP was difficult.  Thanks to those adult FOPers, we are lucky to know that if we protect Erin’s head now, it may lessen some future damage.

When we finally picked out the Halo helmet, I said we might as well write on it, “Look at me!  I have FOP!”    I even left a space on her helmet just in case we wanted to put a saying in addition to the stickers for decoration.  Over time the helmet has grown on me.   Erin wears it when she leaves the house.  She doesn’t wear it in the house and maybe she should.  Most falls happen at home.  Some of the Erin’s worst head flare-ups were from falls on soft carpet. 

I cannot imagine there NOT being a parent of a FOP child that wouldn’t agonize over the decision to draw more attention to their handicapped child.  I know that I (for one) was trying to find ANYTHING different than these medical style helmets that would protect Erin but conceal the purpose.  My friend Tina’s father was researching different options.  He concluded that protective gear for hockey players would be a good choice.  For now we are sticking to the Halo helmet.  Karen and I both agree that we hope our little girls will have better balance coordination by the time they start kindergarten.  Hopefully by then we can eliminate the helmet at least until she can make that decision for herself. 

As I wrap this up, I have to share my favorite helmet story.  When we were at Dr. Kaplan’s office at U Penn, we were on line to sign in at the registration desk in the Orthopaedic Surgery office.  There was a woman ahead of us with big hair, big make-up, big perfume and tight animal print clothes.  At that moment I knew I was no longer in the pacific northwest.  She turned around and smiled at Erin.  With everything “big” about her I was preparing myself for a “big” attitude.  Surprisingly the lady recognized Erin’s helmet as a Halo brand.  She bent down to Erin’s level, gave a big smile, and said, “You know, only angels wear halos.”  That woman became my best friend for that moment in time.