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.

Again, thanks to my wife’s brother, we got in that same Friday afternoon who got us in to see Nemours Children’s Hospital’s Pediatric Oncologist, who looked at the films and felt it was not malignant, which was some relief to say the least. He sent us down the Nemours Clinic hall to see their Pediatric Geneticist for a family history, and then for a third visit to Nemours Pediatric ENT; and a fourth visit to Nemours Pediatric Ophthalmologist, because the MRI also showed something in her right upper eyelid as well. None were able to make a diagnosis that day, but what awesome patient and family care they provided that Friday afternoon to our distraught family worried about what these films showed inside our baby. And they were open and honest that they did not know what it was. After ten more months of searching and meeting with multiple doctors in Orlando, multiple MRIs, CTs and Pet Scans to no avail, we ultimately were referred out of Nemours to a neurologist, Dr. Ronald Davis, who was baffled as well. But he too was honest enough to say so, and he referred us to one of his Harvard professors, Dr. Bruce Korf, who was then at Harvard Medical Center / Boston Children’s Hospital and “would be able to diagnose her if anyone can.” We immediately made the trip to Boston, and made the NF diagnosis. I remember that moment too, of being falsely relieved to “know” what we were dealing with, and asking, “Okay, what’s next to get this taken care of?” His words still ring in my ears. “I wish I could tell you. There is no known cure or viable treatment. I guess what is next is to join the efforts to advocate for research to find a treatment and a cure.” Dr. Korf is now at UAB and is the world's leading geneticist authority on NF. We still see him in Birmingham to this day.

Through all of this, and now eight years old, she has now been diagnosed with what the doctors call a “constellation of issues”, including multiple “plexiform neurofibroma” tumors inside her body along her nerves on the spine, particularly the cervical and thoracic regions, the neck, and the chest and out toward her arms, and on the right eyelid. She is extremely sunlight sensitive in her right eye. Her spine has scoliosis in the thoracic region. She has neurofibromas in cranial nerves near the brain, but not the substance of the brain itself. She also has bone deformities in her right leg, which include bowing of the tibia and tibial dysplasia. She has skin café-au-lait spots in several areas, though most are faintly colored. She continues to have MRIs of her head, neck, chest and lower extremities twice a year to monitor for any growth.

Surgery would not be an option worth pursuing unless her quality of life issues become so bad that the risk of surgery, which likely involves the loss of some body function controlled by the nerves which the tumors envelop, could potentially improve things. These tumors are not just blobs they take out like you so often hear with cancer surgeries. These tumors are like taking play dough and kneading it into a ball with all the strands of threads in your Mom’s sewing box. Imagine trying to cut out the play dough (tumor) without cutting a thread you can’t see when the threads (nerves) potentially control the heart beat, or eyesight, or bowel movement, or speech or body movement. The doctors told us, “we don’t know what nerves we cut and what functions could be potentially lost until the patient wakes up after surgery…if they wake up.” In terms of the tumors along her spine which are starting the enter the spinal canal itself, the neurosurgeons describe the procedure as “going in and removing the back half of the vertebrae, removing a portion of the neurofibroma to relieve pressure on the spinal chord, and then, if there is any bone matter left from the back half of the vertebrae, we try to put it back with screws. Often, there is substantial damage to the bone while cutting it off to get at the tumor.” Obviously, surgery is a very last, very drastic dreadful resort.

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.

We continue to pray that the tumors remain stable or, more desirably of course, shrink or disappear through the mercy of our most gracious God. One of her small tumors in her right tibia has in fact done that. Her orthopedist looked at the films and asked, “Which leg has the tumor?” she said, “This is amazing and wonderful, but I have no explanation.” We said, “We do, it is God’s work!” We pray that: God’s will is to continue to protect her against any further growth or complications from NF; give her the strength and spirit that only He can in this battle; that she will receive the power of His healing; and that the researchers and doctors will be lead by God through all the data and trials to find the cure for NF.

A second grader today, Lilly Ann loves her friends, bike riding, American Girl dolls, Webkins and her kitty Angel. Lilly Ann is one of those special children who touch others with her loving and warm-hearted acts. People see things she does and hear things she says, and then they look at us shaking their head, complimenting her gift of a heart for Jesus and for loving and caring about and for others before herself.

We have not yet found the proper moment or method to tell her about her condition so she can feel just like everyone else. She does understand that God makes everyone different and does seem to know she has some issues that she “just has like others have things to deal with which God will help with”. We will tell her when the time is right. She is a marvelous little God's girl and has a wonderful lust for life and an incredible wisdom.

At only 5-years-old, at home one night in the family room, out of the blue, she told me, “Daddy, I want to go to Heaven. One day, we will all go there and be together again. God will make us all new and we’ll come back again won’t He?”

Yes baby sugar, He will. He absolutely will.

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.

More on NF and the Children’s Tumor Foundation…..

There are three types of Neurofibromatosis, all genetic disorders: NF1, NF2 and Schwannomatosis. NF affects all races, ethnic groups and both sexes equally and it can be fatal. About half of the cases are inherited and the rest are obtained spontaneously in the womb.

NF 1, which Lilly Ann has, occurs in 1 in 3,000 births and can cause tumors that grow on nerves anywhere in or on the body. NF1 has a wide range of severity, ranging from café au lait spots learning disabilities, bone abnormalities, disfigurements, to brain and spinal tumors.

NF 2 occurs in 1 in 25,000 births. NF2 causes brain and spinal tumors, affecting the nerves for hearing, sight and balance. NF2 can result in deafness, motor impairment and cataracts.

Schwannomatosis occurs in 1 in 40,000 individuals. It is a more rare form of NF, with current work focused on identifying the affected gene. The hallmark of Schwannomatosis is chronic pain caused by nerve tumors.

What is amazing is how few people have heard of NF, even though over 125,000 Americans alone have it, making NF more prevalent than Cystic Fibrosis, Duchene Muscular Dystrophy Tay Sachs and Huntington’s Disease combined.

NF doesn’t have a celebrity like Jerry Lewis or Marlo Thomas to lead fundraising. That is why I am asking you to help the Children’s Tumor Foundation in finding a cure by making a contribution to help Lilly Ann reach her goals in the NF Heroes program associated with the wonderful Racing for Reseacrh program.

The Children’s Tumor Foundation (CTF) is the leading non-profit 501(c)(3) medical organization dedicated to improving the health and well being of individuals living with NF. The Foundation funds critical research to enable effective treatments and ultimately, a cure for NF. Also, the Foundation provides education and services to patients and families, serves as a resource to health professionals, and increases public awareness of NF.