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 drop off our taxes. Thankfully we are getting a refund. With the refund money we will plan a trip back east sometime in September. We haven’t had time to really map out a plan but we’ll fly into Tennessee and visit all the grandparents and aunts and uncles. We can then make our way up to Philadelphia to see Dr. Kaplan. I’m thinking I will be more receptive to information on research possibilities in September than I am currently. Right now…to me, FOP is a death sentence although I consciously know Erin won’t die from this. I am crying for the loss that she’ll probably never drive, get married, have kids…do all those wonderful things that I have been blessed to do. Honestly I am so overwhelmed with sadness right now…I don’t know what to do. I KNEW the diagnosis was going to be positive for FOP but the sadness is so overwhelming.
Please help us get the word out about FOP. No family should go through what we’re going through right this very moment. I need to raise awareness for FOP. I may not be in a position to raise money for FOP research but I can raise awareness of FOP itself.
Thank you to all of you for your prayers and positive thoughts. This is the biggest challenge life has dealt to myself and Alan. Thank you…thank you…thank you!
