The 15-year old girl suffers from a rare and little known condition called Ehlers Danlos Syndrome. It was officially diagnosed last September, and has caused significant challenges for her and her family. On Saturday, March 11, at the Home Hotel, the latest fund-raising effort for the family will take place featuring a rainbow auction with many top-notch items.
According to Neva’s mother Sovay Desmarais, EDS is a genetic disorder that is always there, but usually hits crisis around puberty. It is a connective tissue disorder that is caused by a defect in the structure, production or processing of collagen or the proteins that interact with collagen. Collagen helps with the body’s structure, and a condition with it can make the body more fragile. Earlier in her life, the family thought that Neva was “accident-prone” as she was hurting herself a lot. The truth is, her body was made fragile by her condition. After a trip to the medical professionals in Boissevain last fall, the proper diagnosis was made.
“We didn’t put two and two together,” Desmarais explained. “It is on the rare disease list. There are not a lot of doctors that are familiar with it. It left us scrambling.”
What it means is that Neva can be easily injured. For example, she dislocated a finger putting on her jacket. She also put the finger back in. As her mother said, Neva has gotten used to dealing with her issues.
“This has become normal. She wouldn’t bring it to our attention. Her joints are loose. Collagen gives structure to the joints. So they are moving outside their range. She is prone to injury and her skin is more fragile and stretchy.”
This makes it easy to fracture bones. Other possible complications include damage to internal organs, which also rely on collagen for strength.
Right now, Neva is in a wheelchair about 90% of the time, using forearm crutches to get through areas the chair does not fit. Even in the chair, she injured her wrist.
Neva has a specialist in Winnipeg and does regular physiotherapy. The family – including father Chuck Nowazek and brother Kieran – was hoping to have an appointment at the Mayo Clinic to help with the EDS, but recently heard from them saying they felt there was nothing they could add to her treatment.
“It was really disappointing,” Desmarais said, adding that they really need a team of specialists who deal with the different parts of the syndrome like a cardiologist, internal medicine doctor, etc. “We are looking at other places and other doctors. We will just wait and see. The U.S. has more specialists and more options.”
Right now, the treatment is aimed at preventing Neva from hurting herself, and maintaining her strength and flexibility. Although she is prevented from doing many things she once did, she can still enjoy swimming and is still going to school in Killarney full time, playing many instruments in the band.
“She is an amazing kid for 15. She is very responsible, mature and is handling things amazingly well.”
But there are challenges. The family lives in a two-story house that has obvious issues with wheelchair accessibility and needs work. She is in a wheelchair that is not appropriate for her. Neither of the family’s vehicles are wheelchair accessible which makes movement difficult. This is particularly true as Neva will be ready to go into Driver’s Ed. soon.
These are some of the needs the community is trying to address. The upcoming fund-raiser was began by Linda McNarland, who heard last fall about Neva’s condition from her grandmother. McNarland said she started hinting to people that someone needed to start a fund-raiser for the family, and when no one stepped up, she did herself. She began small, but when larger prizes began to show up, she decided to do a ticket draw, but auctioneer Warren Wright, who is known for helping out for many causes, felt they needed to up the ante.
“A few weeks ago, Warren said to me ‘this is a kid, we have to do more,’” McNarland explained, “So it became an auction. I’m glad I’m doing it, it is well worth while.”
The auction does indeed have awesome items. There is a helicopter ride from Trevor Hicks and Avon and Epicure items. Most amazing are the number of sports articles. For example, there is a signed jersey from Chicago Blackhawks captain Jonathan Toews, a stick from the Edmonton Oilers’ Jordan Eberle, a jacket and signed alumni stick from the St. Louis Blues and signed curling jerseys from Jennifer Jones, Mike McEwen and Val Sweeney and more. McNarland gives Wright the credit for this, saying he has amazing contacts. There is certainly plenty to bid on come Saturday night.
“We started this and it kind of snowballed. It is awesome. The more money we make the more we can help. We will raise as much as we can.”
Already, they made $3,190 out of ticket sales at a recent meat draw, with the Lions Club donating $800 from the proceeds of the event. The Boissevain Dart Club has donated $800 as well. For those who want to give, family friend Hydie Stouffer has set up a GoFundMe page for the family, which currently sits at just under $1,600.
For the family, the hope is they can get the local living situation in better shape, and get Neva to a new specialist clinic. Maybe with help of braces, she can start walking again. At any rate, they have certainly appreciated the help they have received.
“I just want to give everyone a huge thank you,” Desmarais said. “We have been so overwhelmed by how kind people have been, how generous. It is not something we ever expected. We are the kind of people who just put our heads down and deal with things. But people stepped forward. It has been awe inspiring and amazing.”
“It makes a difference to Neva. It makes this place feel like home to us.”
She said they are focusing on making life easier for their daughter, but the support from the community simply makes it easier.
“We want to give the community a big thank you,” Desmarais reiterated. “You have been amazingly helpful.
by PAUL RAYNER, Recorder staff