It would appear that Sara is finally not alone with her NF, or even how it affects her body.
The Children's Hospital in Denver holds a multiple disciplinary clinic for NF patients once a quarter. After the July clinic, the Genetic Coordinator emailed me and asked me if I would be willing to communicate with a family that had just entered the program. Their son is 3 years old, and has similar leg problems to Sara, so she asked if I would be willing to chat with the mother about Sara's case.
We have been emailing once or twice a week since that time. Her name is Kelly, and her son is Travis. You can read Travis's journey with NF on his blog (There's a link to his page on the right under My reading List.). I find it very unfortunate that we have to meet under these circumstances, but I'm so glad we have.
And we did finally meet face to face at the NF walk earlier this month! She has a lot on her plate with 3 sons and a husband, the youngest son with NF. Sara and Travis were both quiet, and seemed to be just checking each other out. We are planning to get them together again in Oct. when it will be a little less chaotic. I can't wait!
I'm so glad that now neither of our children have to face all this alone. They are close in age, both 3 years old, and they have similar presentations of NF. I don't know how Kelly feels, but I think it will be great for them to have a friend that is just like them. I really hope that we will be able to get to know each other much better, our kids get to know each other better, and that we can get together as often as possible. They live a couple of hours away, so getting together probably won't always be easy, but hopefully we will make it a priority. And if nothing else, we'll always see each other at the hospital (not that its an ideal place to hang out).
Sara and Travis are no longer alone, but neither are Kelly or I. I'm so grateful not to feel alone any more when dealing with Sara's NF. I have lots of support from family and friends, but it isn't the same as having another mother to relate to who is going through the exact same things as I am.
Thank you Kelly and Travis for coming into our lives! We can't wait to see you next week at the conference!!