A mother’s mission
By REBECCA WALDEN
When a lump appeared on her son’s neck, Renie Moss didn’t know what to think.
Philip had just turned 5, and he appeared healthy. He was making new friends at Vestavia Hills Elementary West and settling in for a bright year, his family’s first in the city after moving from Homewood.
The lump scared Renie, so she had Philip tested. Everything came back normal, but over the next year it continued to grow. Around his sixth birthday, Renie and Philip tried a new doctor — pediatric ENT Audi Wooley of Vestavia Hills.
“I remember [after the test] Dr. Wooley told me I would receive a call from a UAB geneticist by the end of the day, and that he did not want me looking up anything on Philip’s diagnosis on the Internet,” Renie said. “But like any good mama would, that is exactly what I did. And what I saw was very scary.”
Although it was classified as non-cancerous, the bump on her son’s neck was a tumor caused by neurofibromatosis (NF). NF is a genetic disorder of the nervous system that causes tumors to grow on nerves, the National Institute of Health reports. Usually, the tumors are benign, but sometimes they can become cancerous. There is no treatment, nor is there a cure.
Two years later, the Moss family learned Philip wasn’t its only carrier. Their daughter, Helen, also had NF.
Renie said NF causes symptoms that vary from person to person, and these will affect her children for the rest of their lives. In school, it could manifest with learning disabilities ranging from dyslexia to attention-deficit disorder. Asperger’s syndrome also shows a close link with NF. In puberty, NF can lead to tumors that cover the skin.
“Not everyone ends up looking like that,” Renie said. “But for those who have to deal with it, you can imagine the self-confidence and self-esteem issues.”
In dealing with this new part of their lives, the Moss family learned quickly that little awareness and support existed locally for those impacted by NF. At first, she was frustrated. But that frustration soon evolved into advocacy.
Through word of mouth and social media, Renie connected with families in Vestavia Hills and others in the area who are dealing with NF, and together they formed the Alabama Chapter of the Children’s Tumor Foundation.
The Foundation is an international nonprofit that seeks treatments for the disorder. According to the its website, ctf.org, NF affects one in every 3,000 people — more than cystic fibrosis, Duchenne muscular dystrophy and Huntington’s disease combined.
“They say it is the most common genetic disease you have never heard of,” Renie said.
Her work with the organization has since made her a point of reference for others in the area, like Vestavia residents Wes and Stephanie Waldrop. They reached out to Renie when their daughter, 3-year-old Ellie, was diagnosed.
“About a once a month, I’ll get a message from people, often from individuals I don’t already know, who are reaching out because they’ve received a new diagnosis and they are scared half to death,” Renie said. “As we are coping with this as a family, I have also found myself in the position of helping others not be afraid.”
On May 10, the Foundation will host the inaugural Birmingham NF Walk at Railroad Park. Renie said the event will feature a carnival atmosphere, complete with face painting, food, prizes and live music.
The Alabama Chapter initially accepted a challenge to raise $20,000 prior to the event, and Team Moss set its goal for half of that. As of mid-March, the walk had raised more than $21,000, and the Moss family had raised approximately $9,700.
“This event really is about raising the profile of NF and thanking UAB and all the specialists who have helped us and provided some support when there wasn’t any,” Moss said.
In the months following the race, Foundation leaders also are working to implement standing support meetings and contact information so that area families living with NF can reach out to someone local who can relate and provide helpful counsel.
As for Philip, the tumor on his neck continues to grow. In the two and a half years his diagnosis, it’s enlarged from 2 centimeters up to 9 centimeters. The growth is beginning to crowd his airway and has displaced his carotid artery.
“They can’t figure out how to make it stop,” Renie said. “That is our main concern right now.”
While she prays and endures specialist after specialist visit with her son, Renie is pouring all her energy into awareness and building a supportive NF community so that no one facing NF has to shoulder that burden alone.
“Not everyone approaches things the way we do,” Renie said. “This is certainly not what I expected or what I had asked for, but our faith has been strengthened, and that is what leads us through this.”