Family spearheads benefit to raise money for tumor research

October 26, 2010

By Laura Geggel

The Lynch family — Kirstin, Hayden, Brendon and Charlotte — is working to organize a fundraiser that will support tumor research, and, in turn, their son Hayden, who has neurofibromatosis 1. By Lynette Huffman Johnson

In the delivery room, doctors noticed Hayden Lynch’s large birthmarks, called café au lait spots. Furrowing their brows, they told his parents, Kirstin and Brendon Lynch, that the spots could be a sign of neurofibromatosis type 1, called NF1.

In addition to the spots, the disease causes neurofibromas — tumors that can grow anywhere in the body, especially just under the skin, in the brain or on the spinal cord, according to the Mayo Clinic. Usually, the tumors are benign, but they can put pressure on surrounding areas, causing pain or loss of function, such as blindness, deafness and cardiovascular problems. Still, many NF patients can lead full, productive lives, according to the Mayo Clinic.

About 1 in every 3,000 children have the disease. It can be genetic or a random mutation on chromosome 17, which makes a protein called neurofibromin. The protein is thought to suppress tumors, which would explain why a mutation would lead to tumor growth, according to the Mayo Clinic.

Family jumps into action

The Lynches are helping organize an auction, FuNFor A Cure, to help raise money for the Children’s Tumor Foundation. Adventure Kids Playcare in Issaquah will provide a 50- percent-off babysitting discount for all families attending the event.

“To find a cure for NF would be lovely, but to find drugs that would prevent tumor growth, in the long run, will help people with tumors due to cancer and those with NF-related tumors,” Kirstin said.

Instead of focusing on the spots, the couple delighted in the birth of their first child. They found the bubbly, brown-haired boy loved Thomas the Tank Engine and playing games, a real lover of life, his mother said.

Hayden’s parents slowly recognized other symptoms of the disease: He was slower to develop his speech and slower to walk. He had a general weakness and at 18 months, the family confirmed his diagnosis of having NF1 when they took him to a geneticist at Seattle Children’s. Other than that, he was a happy-go-lucky child who enjoyed playing with his friends.

Living with neurofibromatosis

At age 4, Hayden’s grandmother noticed he was holding his head at a tilt in most of his photos.

“We thought it was quite quaint in the pictures,” Kirstin said, but she still took him to Seattle Children’s.

She and her husband suspected Hayden was developing scoliosis, a common effect of NF1, but they were mistaken. An MRI showed he had an optic nerve tumor and a tumor on his brain stem.

Doctors said he might have been tilting his head to help relieve pressure caused by the tumors. Immediately, Hayden began a six-month session of chemotherapy, which didn’t work, except that the tumors did not grow any larger when he switched to a new drug.

During chemotherapy, doctors discovered a new tumor in his cerebellum, bringing his total number of brain tumors to three.

Hayden handled chemotherapy as well as a 4-year-old could. With his immune system knocked out, he had spiking fevers, weight loss and spent time in the hospital recovering from his illnesses.

“He was amazing,” Kirstin said. “For the first six months, we would end up at Children’s every other weekend. He battled through, bless him.”

Hayden battles on

Hayden returns to Children’s every three months to have an MRI. If his tumors start growing again, he will have to go back on chemotherapy, Kirstin said.

In the meantime, he plays with his little sister Charlotte, although a recent downturn sent him to the hospital again, causing him to miss more school.

His Sunny Hills Elementary School teachers Jessica Clark and Suzanne Schoot and Principal Sarah White visited him in the hospital Oct. 16.

“Hayden is such a wonderful boy, and so eager to learn and to do a great job,” White said. “He has the biggest smile and a sweet sense of humor. It was great to see him.”

He asked Clark about her lessons as he played with Legos, and she told him his classmates were working on more get-well cards to send him.

“He was just eager to hear about his friends and about what is going on in the classroom,” White said. “To part of me, he’s just an ordinary boy we have here, except he is fighting this extraordinary battle.”

Some Sunny Hills staff are volunteering at the auction, and Kirstin invited the community to come bid on local items, as well as hear music from Smoke and Honey.

“We have local wines and chocolates and a local jazz-blues band,” Brendon said. “Importantly, the reason driving us is to help raise awareness about this shockingly underfunded disease.”

Kirstin and Brendon have already participated in the Seattle to Portland Bicycle Classic in honor of their 8-year old son.

“If we were sitting on those bikes and we were whining, we would look at each other and say, ‘This is nothing compared to what he is going through,’” Kirstin said. “He has gone through more than I think I have in my life.”

If you go

FuNFor a Cure

  • 7-11 p.m. Nov. 6
  • Blakely Hall, 2550 N.E. Park Drive
  • Tickets: $40
  • Register here.

Laura Geggel: 392-6434, ext. 241, or lgeggel@isspress.com. Comment at www.issaquahpress.com.

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