April 16, 2014 7:25 pm

Winnipeggers help support families facing rare disease

WINNIPEG – Many people have never heard of it, but Batten disease is slowly taking three Winnipeg families’ children from them.

“Everything was very normal and suddenly she got this disease,” said Amandeep Parmar, who’s daughter Rosa has Batten disease.

Rosa was four years old when she had a seizure and fell. After repeated visits to doctors in Canada, Germany, India and the United States, she was diagnosed with Batten disease.

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“It is very hard to see your child die in front (of you) every day,” said Parmar. “I know she is losing every day.”

Batten disease is a rare inherited disorder of the nervous system that develops when a child has two defective genes.

There is no cure and it is always fatal. It is unusual for children with Batten disease to live beyond their teens.

The disease only affects around a dozen Canadians. Four are in Manitoba, with three living in Winnipeg.

“It takes away the special times,” said Daniella Butler, one of Rosa’s friends in her Grade 1 class at James Nisbet Community School.

The school has rallied around Rosa, who is now seven years old. It held an awareness walk for Batten disease with around 600 students.

On April 26 there is a fundraising run called Laps for Life being held at Kildonan Park. All the money collected will be divided among the four Manitoba families dealing with Batten disease.

That isn’t the only way organizers are raising funds.

“Rather than hoping people will come to the race, we will take the race globally,” said Jody Zarn, the organizer of Laps for Life.

Until April 26, people anywhere in the world can go to the Running Room website and upload a picture of themselves doing physical activity with a sign saying they are doing it for Batten kids.

It costs $5 with the money going to the Canadian Batten Association.

“We are really hoping this will go viral and we can get pictures from all over North America to support these families.” said Zarn.

Photos have been submitted from as far away as India.

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