Philip Moss celebrating his 16th birthday with his family.
The Neurofibromatosis Normal:
Living with an Incurable Disease By Paige Townley
For 16-year-old Philip Moss, living with a rare, incurable disease is just normal. It’s life as he has practically always known it. But for his parents, Renie and Philip Moss, Sr., finding out their son has neurofibromatosis was quite a shock – one they still vividly remember 10 years after diagnosis. “It was completely unexpected,” Renie says. “We knew that it thankfully wasn’t cancer because that had been ruled out by bloodwork. We honestly thought it was just a scarred lymph node, so it was a complete shock when we got the phone call that it was neurofibromatosis.” Neurofibromatosis (NF) is a rare, genetic disorder that causes tumors to form on nerve tissue. It can happen anywhere in the nervous system, and while they are usually benign, the tumors can become malignant. There are three types of NF: NF1, NF2, and schwannomatosis. Philip has NF1, which, according to the Neurofibromatosis Clinics Association, is the most common neurological disorder caused by a single gene and occurs in one in every 3,000 children. Overall, NF affects approximately two million people worldwide, and each type has its own signs and symptoms. For Philip, it started with a swollen area on his neck. “We went to the pediatrician, and they treated it with antibiotics but nothing changed,” Renie says. 18 | birminghamparent | SEPTEMBER/OCTOBER 2021
“Six months later, after testing at Children’s of Alabama, we found out it was actually a tumor that signified NF1.” Philip was six years old when diagnosed, though many children are diagnosed as babies. Within a week of diagnosis, the family was meeting with geneticists at UAB. “There were so many emotions,” Renie says. “We didn’t want to create fear, but we wanted to maintain his trust. Philip was smart and he wanted answers. We had to talk to a family counselor to figure out age-appropriate ways to share with him what was going on medically but let him know we were going to take care of it.” At that time, Philip was just starting kindergarten while also undergoing MRIs for doctors to best understand how to create a care plan. With NF, it can be quite difficult to treat as the tumors grow slowly, so chemotherapy won’t work, and with the tumor being on a nerve, surgery can cause significant, irreparable damage. For Philip, because the tumor in his neck was not causing him any pain and sitting on critical nerves, doctors knew surgery wasn’t an option. “We knew it would create more problems to remove it, even though it was going to create serious issues as it grew,” Renie says. “It was growing, and we couldn’t stop it. That was an issue.” So, the family had to live with NF1 and watch the tumor grow and tried not to not let the disease define their family. “We wanted to focus
