A B.C. girl with a rare genetic disease who is known for her spectacular fundraising efforts may finally get the chance to undergo a treatment that could alter her life forever.
Jeneece Edroff, 18, has neurofibromatosis, a disease that causes tumours to grow on her nerve roots. While she’s had many surgeries at BC Children’s Hospital growing up, a growing tumour in her leg and problems in her spine that could leave her paralyzed have yet to be treated.
That could all change now, as Jeneece and her family head to the Mayo Clinic, a medical centre in Minnesota that specializes in Jeneece’s disease. The trip down was made possible with the help of the provincial government, community donations, and an anonymous donor who offered to fly Jeneece’s family down in his private jet.
Without that help, the family would not have been able to afford the trip and the medical assessment, said Jeneece’s mother Angie Edroff.
“Jeneece has been feeling very down in the last eight months because she’s afraid she’s going to lose her leg, and this has taken a lot of stress off her,” she said. “The fact we’re going down so quickly has boosted her spirits.”
Jeneece says she hopes the Mayo Clinic can offer some answers.
“I hope by Friday that maybe they can do surgery on my leg and find out more about my back and just let me know what they can do and what they can help me with,” she said. “Maybe they can get treatment here in Canada so I can at least be home for some of it.”
Despite the hardships of her disease, Jeneece has managed to maintain a positive outlook.
“I want the province and Canadato know that this is something that I’ve been waiting for,” she said. “And I want people to know that if you have to fight for medical treatment, fight for it because it’s not right for the government—no offence to the government, don’t want to blame them or anything—it’s not right for people to have to wait for treatment when they desperately need it, so just fight for what you believe in.”
Over the course of her illness, Jeneece has made a significant impact in many people’s lives by raising funds for charity through penny drives. She has raised $1.5 million for Variety Children’s Charity and $6 million for a Victoria Hospice.
“She wants to be like a teenager, she wants to be able to do things and play things, and she hasn’t been out to do those things and it’s really tough on her,” said Jeneece’s father, Denis Edroff. “She’s done all this fundraising to help other people. Maybe this is payback, to help her in her life because she’s had it really rough all her life.”
With files from CTV British Columbia's Brent Shearer
