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Campaigner for children, Jeneece Edroff, faces battle of her own

Sep 26 2012
Jeneece Edroff and her dog Sir Penny at her home last January. 

Jeneece Edroff and her dog Sir Penny at her home last January.

Photograph by: Adrian Lam , timescolonist.com

Jeneece Edroff, Order of B.C. member and community fundraiser extraordinaire, is looking at another operation, one that will likely leave her unable to walk.

Jeneece's mother, Angie Edroff, said the family is now waiting medical tests, scheduled for next week, to determine the extent of a likely tumour in her daughter's spine.

"They are kind of waiting for the final report so they can sit down and give us the whole picture," said Angie, adding Jeneece "keeps a stiff upper lip."

Jeneece, 18, has been a public inspiration ever since she was a child and first diagnosed with neurofibromatosis, a disorder that causes tumours to grow along nerve pathways. In her case tumours are growing in her spine causing vertebrae to become thin.

Despite the painful condition, at the age of seven, Jeneece, initiated a penny drive at her school and raised $164, which she presented to the Variety Show of Hearts Telethon.

The following year she managed to bring in 16 tonnes of pennies, worth $27,000. Over the years she has been credited with raising more than $1.5 million for Variety. In 2012 she was made a member of the Order of B.C.

She was also inspiration behind the $5.5 million Jeneece Place at Victoria General Hospital. It's a place for out-of-town parents to stay while their kids are receiving treatment.

At this moment, Jeneece has been told the next operation could leave her unable to walk. To date she has endured at least 15 operations, nine on her back, to correct her condition. She has had 40 screws, and some bone tissue form her leg, inserted into her spine.

But Angie said Jeneece's right leg has gone numb, which has doctors suspicious she has a tumour growing in her spine.

On the other hand, operations to address the issue have been held up because doctors can't get investigative reports from radiologists. All those screws and other material in Jeneece's back have complicated things.

Angie also said she is determined to get a second opinion, after those final investigative reports are in, from the Mayo Clinic. The Mayo in Rochester, Minnesota, has a clinic dedicated to neurofibromatosis.

Health Minister Margaret MacDiarmid said in a telephone interview the ministry has yet to hear any request for an out-of country medical trip from the Edroffs.

"The first thing that needs to happen is the doctor, or the specialist, needs to contact the ministry," MacDiarmid said. "That hasn't happened."

In the meantime, she said B.C. Health Ministry officials are trying to reach out to Jeneece and her family.

Under B.C.'s process a consulting physician makes the request to the Health Ministry on behalf of a patient for out-of-province treatment.

A medical consultant reviews the request, and consults medical literature with B.C. medical experts.

If evidence supports an out-of-province trip, funding is made available.

rwatts@timescolonist.com

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