Sharing the struggle

Children’s Tumor Foundation plans annual fundraiser

Susan Lynch and her 17-year-old son, Gage, both of Tuckerman, have neurofibromatosis. The Children’s Tumor Foundation will hold a benefit gala in September to raise money for NF research.
Susan Lynch and her 17-year-old son, Gage, both of Tuckerman, have neurofibromatosis. The Children’s Tumor Foundation will hold a benefit gala in September to raise money for NF research.

When Susan Lynch was only 13 years old, her doctor told her mother that Susan should have a hysterectomy. Susan has the genetic disorder neurofibromatosis, and doctors did not want her to pass it on to her children.

“He tried to convince my mom that if I had any children they would be mentally and physically retarded because of the disease,” she said. “I cried and told Mom, ‘I want to have children someday.’”

Susan’s mother did not listen to the doctor, and Susan has had four children. Only her youngest son, Gage Lynch, has been affected by NF. He is now 17 years old and will start his senior year at Tuckerman High School this year.

Neurofibromatosis — or NF — causes tumors to grow throughout the body. According to the Children’s Tumor Foundation’s website, NF “encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin.”

The Children’s Tumor Foundation is a nonprofit dedicated to funding research and finding treatments for people living with NF. On Sept. 11, the Arkansas chapter of the foundation will host its annual Red Carpet for Research Gala in Little Rock to raise money for research, patient support services and scholarships for the international NF Camp.

Susan’s parents first had an indication that something was wrong with their daughter when she was 6 weeks old and had a grand mal seizure, and when doctors noticed spots on her skin, they were concerned that Susan’s parents might be abusing her.

“Whenever the cafe-au-lait spots (spots on the skin associated with NF) first come up, they kind of look like a bruise,” Susan said.

“The doctors didn’t know what it was, so my parents didn’t get to see me for over a week.”

When another doctor familiar with NF saw Susan, he knew right away the spots were not bruises and told the other doctors about the disease. She was returned to her family, but doctors were not optimistic about her outlook.

Susan’s parents were told she wouldn’t live past 3 years old. In her case, the tumors associated with NF did not start forming until she was pregnant with her first child. The tumors have all been benign, but she had to have brain surgery in 2001 when a tumor formed in the middle of her brain.

Gage’s NF was suspected when he was 3 weeks old. His left leg was bowed severely. Susan knew it was probably NF — which can cause bone deformation — but it took appointments with several doctors to find one who was familiar with NF.

Because of his NF, Gage has been through 13 surgeries and developed melanoma when he was 7 years old.

Gage said he does not talk too much with his friends about having NF. Susan said when he was younger, other children could be cruel to Gage, which might explain why he does not like to open up about the disease. Once, Gage and some neighbors were playing 2-on-2 basketball, and he and his friend were scoring more points than the other team. The other boys, upset with the score, threw Gage on the ground and jumped on his leg, re-breaking it and undoing the work of several surgeries.

Susan said it is encouraging to know that research is being done to find treatments and cures for NF. Even just educating doctors is important, Susan said. According to the Children’s Tumor Foundation, NF affects more than 2 million people worldwide, yet many doctors do not know what to do when approached by an NF patient.

“Whenever Gage first broke his leg all the way through when he was 5 years old, we went to the hospital, and they sent him to a bone specialist,” Susan said. “That bone specialist said, ‘I don’t know what to do. I haven’t seen a case like this in 25 years since I went to medical school.’ He referred us to Arkansas Children’s Hospital, and we see Dr. [James] Aronson. He’s wonderful.”

Gage said that after graduation, he wants to get into dog breeding. He has three Belgian Malinois that he plans to train and breed.

Susan said Gage looks healthy and is able to be a relatively normal kid, but he does face limitations. He cannot participate in contact sports, and it is nearly guaranteed that at some point, he will have to have his left leg amputated because of the disease.

“There can be so much going on with a child,” Susan said. “I’m still learning new things that can happen. They look perfectly healthy. Without a cure, you think a child is healthy, but they’re not.”

The Red Carpet for Research Gala on Sept. 11 will begin at 6:30 p.m. at the Statehouse Convention Center in Little Rock. The theme of the event is Dancing With Our Stars, and six local celebrities will pair with dance professionals to compete for a trophy. Attendees will receive photos on the red carpet, dinner and dancing. Individual tickets are $15o.

More information about the fundraiser, the Arkansas chapter of the Children’s Tumor Foundation and NF can be found at www.ctfarkansas.com.

Staff writer Angela Spencer can be reached at (501) 244-4307 or aspencer@arkansasonline.com.

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