Vernon women raise $30,000 for tot facing rare genetic disorder in need of $2.8-million drug treatment

Tot needs $2.8M drug

Vernon fundraising events for an Edmonton tot facing a rare genetic disorder have brought in more than $30,000.

Organizer Tanis Marquette, who had her head shaved along with Bree Gable outside The Beauty Bar on Sunday, says $30,177 was raised.

The women went to school with John Hanki, the father of one-year-old Harper, who is battling Type 1 spinal muscular atrophy.

"Our head shaving event itself raised over $17,000, and the auction raised $12,896," says Marquette. "It was a very successful event – we just passed our goal of $30,000!"

Spinal muscular atrophy is caused by a lack of nerve cells that control muscle movement.

Without highly expensive treatment, the prognosis is not good, and little Harper may not make it to her second birthday.

Harper needs is a single dose of Zolgensma, a $2.8-million drug that has yet to be approved in Canada.

The drug is best administered before the patient's second birthday.

Harper has been entered in the 'baby lottery,' a treatment plan available to families outside the U.S., but the lottery can take time, which is something the family doesn't have a lot of.

"Harper and her family are still fighting very hard for the medication," says Marquette. "It is going to be a long road for them still. We were so happy to have had this opportunity to help them and are so thankful for such an amazing community who came together to help a child in desperate need."



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