Julia is quite a trouper. She handles her doctor appointments and MRIs with a maturity that some adults don't have. Julia is a strong little girl! Julia can't eat hours before her MRI. The MRI is 2 hours long. Julia never complains about not eating for up to 15 hours. She doesn't complain when she throws up from the anesthesia. She just accepts that she has to do this. Julia is going to have to stay the smart, powerful person that she is.

The possibilities that NF has in store for Julia no one can predict. Julia's health is literally for the day. NF is unpredictable and complex. How it will manifest itself through her life keeps us awake at night. As a parent it is very difficult to hear that your child has any special need no matter what it may be. Accepting the fact that Julia has NF has been very difficult for us. Children should be free to grow, play and live healthy happy lives. Parents should be able to love them, watch them grow and have the luxury of small worries.

Julia has been placed on a path with a destination that's unknown, one that has roadblocks we can't anticipate or plan for. Living day-to-day trying not to focus on the negative possibilities is exhausting and necessary.

Together we can and will make a difference, for Julia and all those affected by NF. We hope everyday that a cure or some treatments for NF become available, we also pray Julia never needs them. This is a cause very close to our hearts and we are asking you to join with us and get involved in this fight. Our goal is to raise $50,000 by Julia's 7th birthday. This money goes directly to CTF's Drug Discovery Initiative. A cure and treatments will come sooner if we do as much as we can.

Click here to view photos of our October Glen Cove Benefit Dinner, in honor of Julia, to benefit CTF.