Gill and Rumi Green (Photo courtesy of Okanagan College)

Province covers medical costs for Kelowna boy with spinal muscular atrophy

Spinal taps for Rumi Green’s spinal muscular atrophy treatment cost $120,000 each

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 impacts muscles in the human body that are normally used for walking, head and neck control, swallowing, and breathing.

READ MORE: MSA summer camp all about inclusion

With the help of a family doctor, the B.C. government has 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, you can visit the Okanagan College’s website.


@connortrembley
connor.trembley@kelownacapnews.com

Like us on Facebook and follow us on Twitter.

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

No new COVID-19 cases in Kelowna over the weekend

Kelowna has nine of the Interior Health region’s 13 active cases

West Kelowna woman upset with RCMP response to street brawl

A physical altercation between a group of teens and a group of adults erupted on a West Kelowna street Sunday evening

UPDATE: Missing Kelowna teen located

Police are still looking to speak with the unidentified man she was spotted with

Kelowna real estate agent fined $6,500 for ‘misleading’ website

The website listed several services its owner was not licensed to provide

Water restriction for Hall Road in Kelowna eased to Stage 2

Properties under Stage 2 will receive a letter informing them of the change

B.C. records 30-50 new COVID-19 cases a day over weekend, no new deaths

Many of those testing positive were identified by contact tracing for being linked to other confirmed infections

Five B.C. First Nations call out Canada for ‘discriminatory’ food fish practices

West Coast nations say government ignoring court-won right to chinook and coho

Rent-relief program becomes new front in fight between Liberals, opposition

Opposition trying to draw parallels between decision to have Canada Mortgage and Housing Corp. run program and the WE controversy

Ottawa sets minimum unemployment rate at 13.1% for EI calculation

Statistics Canada says the unemployment rate was 10.9 per cent in July

$45K in donations received after couple’s sudden death in Tulameen

Sarah MacDermid, 31, and Casey Bussiere, 37, died August long weekend

UFO trackers set their sights on Revelstoke skies

Rob Freeman UFO World Explorer and crew went up Sale Mountain

Former Summerlander receives Emmy nomination for makeup work

Lucky Bromhead recognized for her work with Canadian sitcom Schitt’s Creek

Famous Yukon-based bhangra dancer brings movements of joy to Long Beach

Internet-famous dancer is exploring Vancouver Island, visiting the B.C. Legislature and more

Most Read