We are Julia's family and her team. Julia was diagnosed with NF 1 when she was 4 years old. Julia will turn 7 on August 28th.

When one person in a family has NF everyone has NF. All of us worry about Julia. NF is a progressive disorder. Doctors are unable to determine how much NF will affect a child as their life progresses. NF means that tumors grow through your nervous system. NF can mean learning disabilities, bone defects, scoliosis, neurological impairment, neurofibromas, optic gliomas, and on and on... None of us know how NF will manifest itself as Julia grows up. Julia's health is for the day. As parents we worry about our daughter's future. Like all parents we want all our children to grow, love, and find happiness from within. Unlike many parents our child has a disorder that makes every cell in her body move too fast. Julia's cells are speeding on a highway and not getting off at the right exits and causing tumors to grow. The facts of NF keep us awake at night, worrying and wondering about our little girl. There are no guarantees in this life, NF is a daily reminder of that. NF means we take nothing for granted.

Julia has areas in her brain stem that are acting like tumors in some ways, they have mass, and aren't in other ways. Julia has an MRI of the brain every 6 months to re-check those areas. This means that Julia is put under general anesthsia for up to 2 hours.Julia is also having some growth issues, she is being seen by an Endocrinologist that specializes in NF. Julia accepts all these appointments and tests with a courage and maturity that many adults don't have. Julia chats through blood work like she's having a tea party! Julia rarely complains although she has missed play dates, birthday parties, field day at school, the camp carnival and more. Julia has a mild case of NF so far, even with all her appointments and tests. Julia has gone through enough. Any NF is too much NF.

Our hope, dream and wish is that a cure or some treatments for NF become available. Hearing a doctor tell you there is nothing they can do to help your child is too difficult to digest. Listening to them tell you there is no cure is unacceptable. As a parent you feel helpless, in a situation that is so out of your control. You don't know what to do- How can we help our little girl?

We cannot thank you enough for all you have done already for our Julia Ladybug. So many of you have shown all of our children how caring and generous people can be to help The Children's Tumor Foundation find a cure. We believe that they will, that the research they are doing now will help our daughter and so many others that suffer daily with NF. We are in control of this, we will help fuel the cure! We will not rest until this war we wage against NF is won.