Friends With FOP

Alan and Erin went to a meeting with Northshore School District yesterday. Erin has been treated for physical therapy, speech therapy, and education through the Kindering Center which is a birth to three clinic. Since April, we've been working on transitioning her from Kindering into a private clinic but also see what services the school district could offer her. Erin had all her exit tests done in May and because of the test scores she did not qualify for district services. However the district told us that with a FOP diagnosis, everything changes. In August we will reconnect with NSD ...

Wow!  Thank you all for all the positive thoughts and prayers!  We really do have an amazing circle of support around us.  Our home phone has been ringing off the hook...it's hard to find a handset that is fully charged.  I have never seen my inbox so full of emails.  All the grandmothers and neighbors have started separate prayer circles....I am just so grateful.  We have not been all that religous but events like this make you think twice and hope that there is a higher power out there looking after your child.  I have questioned, "Why my little girl?"  ...

Last month we noticed what we now know to be the first of Erin's flare-ups.  Over a month ago, Erin had a large squichy lump in the right of her chest that started to grow larger.  We saw several doctors and pediatricians, and eventually had an MRI to determine what it was. After the MRI it could be seen that it was cartlidge that is turning into bone.  The swelling has subsided, but immediately after it went down we could see that she has limited movement in her right arm.  We looked at photographs from last month, and Erin was swinging ...

Yesterday my dad sent $1000 to help with Erin, which is a great help.  There are several things we need to get her immediately to help keep her safe. One of the first things we're getting for her is a latex-foam bed.  Sue and I have a large king-size version and Erin usually ends up in it sometime during the night.  When we put a foam cover on her hard crib mattress, then she actually stayed in her bed all night... so it appears that she is uncomfortible. One of the other things we're getting her is a jogging stroller.  You've probably ...

One of the best sites to find out "how stuff works" is howstuffworks.com.  I go there all the time, and found out that they have an article on FOP. This article is a straight-to-the-point summary on what FOP really is. http://health.howstuffworks.com/fop.htm One thing I thought was particularly interesting was the medications section: Aminobiphosphonates are anti-angiogenic, which means that they prevent the formation of blood vessels, which bone tissue needs to grow. They also keep too much bone resorption from happening by shortening the life span of osteoclasts. You would think that decreased bone resorption would be a bad thing in FOP, but it turns ...

The good news is that they've recently discovered the gene that causes FOP.  I'm not sure how old this press release is, though... Philadelphia, PA – Researchers at the University of Pennsylvania School of Medicine have located the “skeleton key,” a gene that, when damaged, causes the body's skeletal muscles and soft connective tissue to undergo a metamorphosis into bone, progressively locking joints in place and rendering movement impossible. Identifying the gene that causes fibrodysplasia ossificans progressiva (FOP), one of the rarest and most disabling genetic conditions known to humans and a condition that imprisons its childhood victims in a “second ...

Just browsing around YouTube I found more information about FOP.  One thing that is slightly comforting is that these kids grow up to have somewhat normal lives... which gives me hope that Erin will be ok.