Benefit Planned For Woman Dealing With Rare Disease

Mojo’s will be hosting a benefit Sunday for a local woman who was diagnosed with a rare illness during a family vacation.

Anne (Heidorn) VanDerwalker was recently diagnosed with Guillain-Barre Syndrome, something that affects roughly one out of every 100,000 individuals.

“Her and my mom went to Florida the last week in May for a normal vacation to visit some friends,” said Heather Heidorn DeLong, Anne’s sister. “The two days prior to leaving she had some tingling in her hands and feet, so she went to the emergency room in Buffalo where she lived. Both nights they thought it was a pinched nerve so she continued on her vacation.”

That diagnosis of a pinched nerve was given the Sunday before Anne left for vacation, and by the following Thursday, VanDerwalker was in a hospital and the neurologist had diagnosed her with Guillain-Barre Syndrome.

“It’s basically a disorder where your immune system attacks your nervous system, and she became paralyzed,” DeLong said. “By Friday she couldn’t even lift her arms. She couldn’t walk, she couldn’t feed herself, she couldn’t do anything.”

According to DeLong, following the diagnosis, Anne spent three weeks in the hospital, where she slowly started to improve, but then she caught pneumonia. Doctors told the family the medicine that they gave her during the pneumonia treatment saved VanDerwalker from having to go into the intensive care unit. Following that treatment, VanDerwalker went through two weeks of rehab in a facility in Florida, and then came back to New York the following week.

“We’ve really just been taking it day to day since then,” DeLong said. “She’s starting to get her strength back and she can walk on her own again, but stairs are difficult. She can drive now, too, but she needs someone with her just in case something happens. It’s going to be a long road to recovery, but she’s hoping to get back to work at least part time soon. She goes back to the doctor again soon, and we’ll get a bigger, better treatment plan after that.”

The benefit that VanDerwalker’s family has organized will be held in order to help her concentrate on getting better and recovering, rather than focusing on the bills.

“Being out-of-network and out-of-state, we know that there are going to be more bills than normal,” said DeLong. “We just want her to be able to recover, though.”

At the benefit there will be a disc jockey – Jeremy Nalbone, who went to school with VanDerwalker – as well as beer, food, donations from local businesses for a Chinese auction and a 50/50 drawing.

“We just want to have a good time,” said DeLong. “People have just been amazing, everyone has been overwhelmingly supportive. We just want everyone to come out to show their support, though, since Anne is going to be there. We told her that even if we had to roll her there in a wheelchair, she was going to come out. She has her good days and her bad days, but she’ll be there for the benefit.”

The fundraiser will be held Sunday from 1-4 p.m. at Mojo’s Bar, located at 104 E. Second St. Admission will be $15 for adults and $5 for children, and tickets include food, beer and pop. For more information about the benefit, contact Heather DeLong at 720-5092 or visit the fundraiser Web page at fundrazr.com/campaigns/6Z4c1. Donations are also accepted through the Web page.