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Not alone in the fight

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Photo courtesy of Renie Moss.

Angela Kerper was only 2 years old when doctors found an inoperable brain tumor. Her mother, Hoover resident Kim Kerper, remembers the moment clearly.

“When doctors first diagnosed a tumor in her, it was so aggressive they didn’t think she would live to see age 3,” Kerper said. 

Her daughter was diagnosed with neurofibromatosis (NF), a genetic disorder of the nervous system that can cause tumors to form on nerves anywhere in the body at any time.

NF is a common genetic disorder that affects 1 in 2,500 to 3,000 births, affecting more than 100,000 Americans, making it more prevalent that cystic fibrosis, muscular dystrophy and Huntingdon’s disease combined. There is no cure for NF.

Angela’s brain tumor was inoperable, so it was treated over several years with chemotherapy and radiation therapy. A few years later, Kerper’s youngest son, Michael, was also diagnosed with NF and had his tumors surgically removed. 

“Since there is no cure, these are some of the ways the tumors can be treated, although, unfortunately for some, even these treatments cannot help the person,” Kerper said.

Angela is now 27 and is visually impaired. Michael, 20, has coped with the disease and is now in college at Troy University. Despite the obstacles, Kerper is grateful both of her children battling NF are still alive. 

“As parents it hurts to see what Angela and Michael have to go through, as well as others,” Kerper said. “It takes a lot of prayer. We have to remain positive. We can’t be negative or resentful.”

Families who deal with NF are a close-knit community. In 2014, the Kerpers met Vestavia Hills residents Philip and Renie Moss at the Alabama NF Walk they organized. 

The Moss’ son, Philip Jr., was diagnosed with NF in September 2011, after a simple surgery was supposed to remove what they thought was a swollen lymph node. Then 6 years old, Philip had only been in his kindergarten class in Vestavia Hills for a few weeks.

Philip, now 10, continues to battle the genetic disorder, with a tumor growing on his neck that doctors have not been able to stop. 

“It’s been difficult, but we are working hard to make sure that NF does not define us,” his mother said. 

Last year, Renie Moss joined with the Children’s Tumor Foundation to host the Alabama NF Walk, with a goal to raise funds to support needed clinical research to benefit those battling NF. This year, the second annual Alabama NF Walk will take place Sunday, Oct. 18 at Veterans Park.

“Last year we expected 150 to participate and to raise $10,000; we had over 450 participants show up and raised $53,000,” Moss said. “We expect another big crowd this year and appreciate the public’s support.”

The Alabama NF Walk will be family-friendly, featuring a walk and activities for people of all ages. The event will honor Lorol Rediker, age 4, of Birmingham as its NF Hero. 

“She was diagnosed at age 2 but is a great success story. Her tumor is gone due to effective chemotherapy treatments made possible by NF clinical research,” Moss said.

Two identical twin brothers with NF, Tom and Jon Godwin of Shelby, Alabama, will be honored as the 2015 NF Champions “for continuing to overcome obstacles and challenges of living with NF with hope and determination,” Moss said.

Though there is no known cure for NF, Moss remains hopeful. Her son was accepted into a clinical trial with the National Institutes of Health. In August, Philip and his parents traveled to Bethesda, Maryland, to meet with the doctors who are conducting the trial.

Prior to leaving, Moss expressed optimism.

“After countless MRIs and treatments that haven’t been working, we aren’t giving up hope,” Moss said. “We’ve been on the waiting list for this trial since April 25. The NF community is very close-knit. We’re getting such support from all over the country and are grateful. It is our joy to support the Alabama NF community and newly diagnosed families so that they know they are not alone in this fight.”

Second Annual Alabama NF Walk

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