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Walk raises funds in battle against neurofibromatosis



Published: Sun, April 20, 2014 @ 12:08 a.m.

By Bob Jackson

news@vindy.com

BOARDMAN

Jenn Rice doesn’t mince words when it comes to how she feels about the uncertainty of her young son’s future as a neurofibromatosis patient.

“It’s a wait-and-see, which sucks,” said Rice, who was among the 50 or so people who joined together Saturday morning at Boardman Park for the second annual Great Steps Walk for NF, sponsored by the national NF Network, based in Illinois.

The walk is meant to combat neurofibromatosis by raising awareness and money for research. NF is a genetic disorder of the nervous system that causes tumors to form anywhere in the body, at any time.

Jennifer Krawchyk of Leetonia estimated that there are at least 50 people in the tri-county area who have NF.

“The biggest hope is treatment, and eventually, a cure,” said Rice, 34, of Washingtonville. She and her husband, Eric, 34, had never heard of NF before their 6-year-old son, Alvin, was diagnosed as a baby.

When he failed to thrive and grow, the couple, who lived in Connecticut at the time, took him to Boston Children’s Hospital, where he was diagnosed. Alvin’s young body was covered with some 200 “cafe au lait” spots at birth. The spots are so named because they are the color of coffee, she said.

Alvin now has three tumors, caused by NF, on his brain, Rice said. The tumors are monitored monthly at Akron Children’s Hospital to check for growth. If any growth is detected, Alvin will have to undergo chemotherapy, she said.

Because the disorder affects each person differently, the outcome for Alvin is uncertain, which Rice said is frustrating.

“It’s the most common genetic disorder there is, but nobody knows much about it,” Rice said. “We had no idea.”

Six people had formed a team called Alvin’s Allies to participate in Saturday’s walk.

Krawchyk said some 80 people took part in last year’s inaugural walk, raising about $7,000 for NF research. She said about 50 people were signed up Saturday, and they expected to raise about $5,000.

Like Rice, Krawchyk also has a young son, 5-year-old Kyle, who is afflicted with a mild case of NF. And like the Rices, Krawchyk and her husband, Dave, had never heard of NF before it struck their son.

“We do this for our son,” Krawchyk said of organizing and taking part in the fund-raising walks.

The couple also has a 9-month-old son, Carter, who so far has not shown symptoms of NF.

Kyle was diagnosed when he was 6 months old and has to wear a brace on his right leg because it is bowed and vulnerable to breaking. He also wears a back brace to combat scoliosis, she said.

“He’s worn the [leg] brace so long that it’s just like a part of him,” Krawchyk said. “He never even knows it’s on.” Kyle was running and playing with other kids in the park Saturday, and Krawchyk said he’s a normally active child.

Rice said she and her husband have two daughters, Emali, 13, and Erin, 10, who do not have NF.

Amie Petras, 33, came from Avon Lake to take part in the walk because she is an NF patient and wanted to be able to interact with other patients and their families for support.

She was diagnosed at 17 with NF2, which causes tumors to grow inside the body, as opposed to NF1, which shows outward tumors.

“I was actually diagnosed by accident,” she said, laughing. Her family was being checked for possible carbon monoxide poisoning when doctors discovered that she has NF. She has tumors on her brain and spine.

Over the years, Petras said she’s had two spinal surgeries and three brain surgeries, the most recent being in January. She has no children and doesn’t plan to ever have any because of the risk that she could pass the disorder on to them.

Petras said she works as an assistant cook at a school district near her home and is training to make the switch from the kitchen to the classroom as a teacher.

“Hopefully by this time next year, I’ll be a teacher,” she said.

Petras said she runs and tries to maintain an active lifestyle in spite of her illness.

“I’m abnormally normal for someone with NF, she said, laughing again. “I’m a fighter, so I just keep going. I try to not let it bring me down.”


Comments

1dinkrea(1 comment)posted 3 months ago

Thank you so much for coming to the walk and taking the time to talk to Jennifer, Amie, and I. Your article is well written and I love the "Fast Facts" on the paper version. Thank you so much for helping us get the word out about NF.

Jenn

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2jlyn23(1 comment)posted 3 months ago

Thank you so much for coming out to our walk on Saturday & talking with us about NF and our experiences. As Jenn said above, the "Fast Facts" section in the print version was great, & the article itself was well written. We really appreciate you for helping us get the word out about NF!

Jennifer

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