Two-year-old Rumi Green has a new lease on life after being diagnosed with spinal muscular atrophy (SMA) in September.
The motor neuron disease affects muscles in the human body that are normally used for walking, head and neck control, swallowing, and breathing.
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With the help of a family doctor, the B.C. government stepped up to cover hundreds of thousands of dollars in spinal injections associated with treatment for the Kelowna boy.
During the diagnosis, Rumi’s father and Okanagan College professor Gill Green learned that the injections would cost $120,000 each to help his son battle the disease.
While Rumi has needed spinal taps every two weeks since September, his frequency of injections will go down to one every four months in January. The family currently has spinal injection costs covered for a year.
After an emotional journey, Gill pledged to run the New York City half-marathon in honour of Rumi to help raise funds for further treatment costs.
While Gill hasn’t even run the race yet, his online fundraiser for Rumi has already raised $6,000 USD.
“We were blown away by the outpouring of generosity,” said Green.
“People at the college and so many others in our lives have been incredibly supportive. It’s given us a lot of hope and positivity.”
Moving forward, Gill said he wants to raise more awareness around the disease.
“My goal is to make sure that people know that this genetic disease exists,” said Green.
“Hopefully we can build momentum so that access to medicine and prenatal and newborn screening in B.C. will match other regions across Canada and North America.”
To read more about Rumi’s journey, visit Okanagan College’s website.
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