Helping families understand, live with NF

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This article was published 23/05/2013 (4766 days ago), so information in it may no longer be current.

With the help of a support group, Tracy Gregorash is trying to change the lack of familiarity Manitoba families have with the neurological disorder Neurofibromatosis.

The Minnedosa resident formed the Manitoba Neurofibromatosis Support Group seven years ago as a way of connecting families living with NF after her own son was diagnosed.

The group also helps organize fundraising events, plans support outings for members as well as prepares and distributes resources for families.

Despite the fact the genetic disorder affects one in 3,000 families across Canada, Gregorash said the amount of available information about it is lacking across the province.

“I didn’t know which doctors to use,” she said when her son was first diagnosed. “I had doctors who didn’t even know what it was, so it was really hard to live with something like this.”

According to their website, mbnf.ca, NF is the most common neurological disorder caused by a single gene. NF is classified into three categories that have connections with developmental problems, including learning disabilities, tumours that can cause deafness and vision loss as well as increased risks of other types of nervous system tumours. The tumours NF produces can also become cancerous.

Gregorash said they brought their three-month-old son Seth to a local hospital for X-rays for a bowed leg that later had to be braced. Doctors then told her and her husband to watch for birthmarks on Seth’s body, which can often be linked to NF, she said.

“It didn’t take long for those to start showing up,” she said.

Following Seth’s diagnosis, Gregorash said they were devastated, frustrated and were worried how they would care for their son.

“There were lots of tears … they do not give you much information and when you search online, some pretty scary images appear,” she said. “On the way home from the hospital, I would look at him in the back seat through my tears, so innocent and small in his car seat, wondering what his life was going to be like.”

The support group, which started off as a small gathering of families meeting for coffee, now consists of nearly 50 families from across Manitoba, including local volunteer Doreen Loewen.

“It really hasn’t affected me terribly much except I realized and recognized that this is a group that falls between the cracks because the disorder is not well-known,” Loewen said.

After four of Loewen’s own family members were diagnosed with NF, she wanted to start volunteering.

“From that point on, I wanted to do something to help the group out.”

The group’s fundraising efforts have included an annual run for NF, which was held in Minnedosa last year. This year, Loewen proposed the idea of organizing a benefit social, Let’s Dance for NF, which will take place this Saturday at the Regency Ballroom at Brandon’s Royal Oak Inn. Loewen said the event will be a way of raising awareness about NF in the community.

“When I moved to Brandon seven years ago, I noticed that different people danced in different areas and everybody kept saying that there isn’t enough places in Brandon go out for a nice evening of dancing,” she said. “I just wanted to showcase what people in the community are doing and raise a little bit of money.”

The support group has never targeted the Brandon community before and Loewen says they’re hopeful the event will be a success.

“Just having an event like this is big when dealing with a disorder that no one has heard of, it will open the doors for the next step.”

Tickets are $20 each and doors open at 8 p.m. The event will include an auction as well as feature a variety of dancing including latin, western and ballroom styles that will begin at 8:30 p.m.

Funds raised at the event will go towards sending younger members of the support group to a specialized NF summer camp in Salt Lake City, Utah, as well as sending members to NF forums. The group also hopes to host an educational symposium in 2014.

Gregorash added that being a part of the support group has given her a different perspective when it comes to living with NF.

“What I find with having a child with a disorder is I get to see something different than everybody else does. As much as it might be a hardship, it’s not, because I see the generosity in people that others might not get to see,” she said. “I guess that’s my overwhelming feeling … I would’ve never got to meet the people I’ve met because of it and I get to see that generosity.”

» lenns@brandonsun.com