N01 — January 2013 — Collecting Pennies Through the Pain
Intro: This is a story about giving back. It's about a child who, while battling a very serious disease, inspires thousands to come together and raise money to help others.
"I's been a hard road."
Jeneece Edroff [Jen-eese' E'-roff]has endured more in her 18 years than most adults experience in a lifetime.
"It's uncomfortable. Painful."
"In my life I've had 15 surgeries."
Jeneece, who lives on Vancouver Island in Canada, has battled this disease since age 3. A charity organization there paid for some of her medical care. At age 6 or 7 Jeneece wanted to give back. She wanted to help other kids struggling with disease.
"I started a penny drive in my school. I raised $164.00. And I'm, like, that's not enough."
Jeneece set a goal of one million dollars; a hefty sum for anyone to collect, let alone a child.
"In my whole life I've raised 8 million dollars."
A feat for which she was honored with an award presented by government officials in British Columbia.
But as Jeneece works to better the lives of others, her condition advances.
"My leg's getting worse, it's been uncomfortable, painful.
Doctors in Canada can no longer help her and she faces losing the ability to walk.
"You want a second opinion when you hear that."
Jeneece hoped to go to Mayo Clinic in the U.S., but she couldn't afford it. Then, what she calls a miracle happened. A good Samaritan saw her on the news and offered to fly her in a private jet to Mayo Clinic.
"It is a very, very tough disease, but she is a strong lady."
Dr. Dusica Babovic-Vuksanovic [Doo'-sick-ah Bob'-oh-vich Vook-sahn'-oh-vich]leads the team of experts caring for Jeneece.
"She has a tumor which is affecting one of larger nerves in a body and this is why she has a pain."
After many tests and conversations, Jeneece has opted for yet another surgery to try to remove the tumor. That's not easy because these tumors grow fibers that spread out into tissue and around nerves. But Jeneece is determined to get better so she can continue to make the lives of others better too.
"My main dream? I want to become a child life specialist to work with kids and children in hospitals."
For Mayo Clinic News Network, I'm Vivien Williams.
Neurofibromatosis is a lifelong disease. It tends to flare in young adulthood. Jeneece says she won't let the condition stop her from reaching her goals of helping others.
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