Mother-daughter team raising funds, profile for NF

Disease that causes people to develop tumors motivation behind Olympia group, nonprofit

Staff writerMay 30, 2014 

Kayla Albrightson, 17, recently had a potato-size tumor removed from her upper left arm.

The benign tumor created a world of discomfort for the Tumwater teen and made it impossible for her to hold down the arm until after April’s surgery. She also had a tumor the size of a Tic Tac removed from her eyelid.

Those weren’t her first tumors, and they won’t be her last. Albrightson said a tumor is starting to grow on the back of her leg in a spot where she feels a “pulsing pain” anytime there’s contact. Little bumps also protrude from both sides of her neck.

Albrightson suffers from a condition called neurofibromatosis, or NF. The genetic disorder causes tumors to form on nerve tissue anywhere in the nervous system. According to Mayo Clinic’s website, the tumors are usually noncancerous, and symptoms of NF are often mild. About half of NF cases are inherited, and there is no cure, the clinic reports.

Aside from scars and bumps, most of Albrightson’s symptoms are internal, including learning disabilities. She said medical attention is required only when her NF becomes problematic. However, a deep fear hangs over her when considering worst-case scenarios later in life.

“I just have a fear this will make me blind or paralyze me,” said Albrightson, a junior at Black Hills High school.

Her mother, Tonya Abear, said they manage life with NF one day at a time.

“She’ll conquer anything,” Abear said. “She’s really strong.”

The mother and daughter have formed Team NF Oly to raise money this weekend for the nonprofit Washington State Neurofibromatosis Families. WSNF provides resources for families who live with the condition. The organization also awards college scholarships and sends young NF sufferers to a special camp where they can meet peers in similar circumstances.

“I’m hoping to make people more aware,” Albrightson said of their fundraising. “I want NF to be noticed.”

WSNF president Cheri Stewart said great strides have been made in recent years to raise awareness about the disorder. Stewart is part of an advocacy group that lobbies for research funding in Washington, D.C.

“Research has come a long way,” said Stewart, who lives in Kent and is also board president of the national NF Network.

“For so long, people could live with neurofibromatosis, and for the most part, no one had heard of it.”

Team NF Oly’s yard sale fundraiser began Friday and continues 9 a.m.-5 p.m. Saturday at the corner of Cleveland Avenue and Delta Lane in Tumwater.

The sale features clothes, shoes, knickknacks and more. From 7-9 p.m. Sunday, the team will host a raffle and silent auction — with dozens of local gift certificates available — at Gabi’s Olympia Cards and Comics, 4230 Pacific Ave., Lacey.

With a goal of raising $2,000, the team had brought in $600 by midafternoon Friday, Abear said.

The team plans to participate in a 5K walk/run June 8 in Redmond, and will hold a local field day and barbecue fundraiser this summer.

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