Thank you for coming to Lilly Ann’s NF Hero web page! We posted this for one reason- to raise money for a cure and treatment to Neurofibromatosis.

We spent the first 18 months of Lilly Ann’s precious life among numerous doctors, hospitals and clinics. Her initial symptom wasn’t even an NF marker - she had been born with a slightly pink and swollen right eyelid, which her pediatricians all said was a clogged tear duct at birth, which would go away with warm compresses and massage.

In 2000 at 8 months old, Lilly Ann was prone to sinus infections, and on a routine Friday trip to a nurse practitioner expecting to get an exam and some antibiotic prescribed before the weekend, my wife called me crying and said the nurse told her she just didn’t think Lilly Ann looked right because her chest skin looked mottled (like the palm of your hand when you stretch it), and had some asymmetry in her tongue and the roof of her mouth. We had noticed the same as well but were told not to worry - she'll grow out of it. The nurse practitioner got the doctor to order an MRI, which freaked us out in and of itself. It was one of those Kennedy assassination / World Trade Center 9-11 moments. You never forget where you were and what your feelings were at that moment. Again, this was a Friday, and we were too worried to wait an entire weekend for an MRI to get scheduled the following week. In our rush of trying to get the MRI, we were blessed that my wife’s brother is a radiologist, and he got us in immediately. The film wet read showed peanut-sized tumors in her spine area and potential masses in the neck, which was devastating to say the least. We had only just begun a walk we could never have imagined.

Since the diagnosis, we knew we had to be proactive and not go into any “blame games”, “why-ning” or “pity parties”. Sitting on the sidelines has never been an option. We knew this precious child of God had been dealt a severe blow, and we had one option- zealously fight off all spiritual warfare and commit ourselves to advocating for our daughter to help her and all who have NF to find a cure and treatments and to do everything in our power to provide for her physically, medically, spiritually, socially and emotionally.

On behalf of the Children’s Tumor Foundation and the more than 125,000 American families who have been touched by this disease, we thank you for your consideration of our request. We are on our way to a cure, and your donation is an important step toward a cure. I sincerely thank you for your consideration.