One-year-old Ocea was the centre of attention at a BWS (Beckwith Wiedemann Syndrome) Awareness event Saturday at the KFN administration building. Lori Macpherson is holding Ocea

Teaching the Valley about BWS

BWS Awareness Day is on April 6

  • Mar. 18, 2015 8:00 a.m.

Terry Farrell

Record Staff

Melanie Varney was thrilled with the outcome of her  Beckwith Wiedemann Syndrome Awareness event, held last Saturday at the K’omoks Fist Nation administration building.

“There was a great turnover of people coming in, grabbing a pamphlet, visiting and continuing on,” she said. “I’d say there were about 150 people there through the course of the afternoon. It was just a huge outpouring of love from the community, which was really nice to see.”

The special guest of the afternoon was Varney’s daughter, Ocea, who was born with the rare affliction – an overgrowth disorder that affects approximately one in every 14,000 babies. The most common features are a large tongue, an abdominal wall defect and increased growth, although the list includes many other symptoms.

While the physical abnormalities are stressful in themselves, the most traumatic association with the disease is that children with BWS are at risk for developing various types of tumours.

As many as one in four babies born with BWS develop cancer.

Ocea had corrective surgery at seven months old and since then, Melanie has made it her mission to get the word out about the disease.

This was my calling, my purpose,” said Varney.

Saturday’s event was just the beginning.

She and Mat Collings of Capture the Moment in Media, spent the weekend gathering footage for a video Varney plans on releasing in conjunction with BWS Awareness Day, April 6. She plans to launch her website – www.howbigbws.com – on that day as well.

editor@comoxvalleyrecord.com

 

Just Posted

Relay For Life unites community

Before the start of Relay For Life Comox Valley 2019, participating teams… Continue reading

DJ Shub headlines Cumberland’s Party in the Park

On the weekend of National Indigenous Peoples Day, and the summer solstice… Continue reading

Asian business owners adapt to life in the Valley

Government program helps labour market

Boomer’s Legacy Bike Ride raises more than $40,000

42 registered cyclists ride to Nanaimo and back

Millard Piercy Watershed Stewards receive Keep It Living Award

The Millard-Piercy Watershed Stewards were recently honoured as recipients of Project Watershed’s… Continue reading

10 facts about Father’s Day

Did you know that the special day for dads was first celebrated in 1910?

B.C. VIEWS: When farmland protection doesn’t protect farmers

Secondary residences aren’t mansions, families tell Lana Popham

Bombers down B.C. Lions 33-23 in season opener

Former Lion Andrew Harris leads Winnipeg with 148 rushing yards

Northern B.C. family remembers murdered Indigenous woman with memorial walk

Still no closure for Ramona Wilson’s family 25 years later

Monkey spotted on late-night jaunt in Campbell River

Conservation officers also apparently looking for cougar in the area

B.C. university to offer mentorship program for former youth in care

Students using the provincial tuition waiver program will soon be able to form a community at KPU

Cyclists competing in one of the toughest bike races on the planet pass through Fernie

Divide riders looking strong as they finish first leg of 4160 km race

You might not know these B.C. records are public

Hired a lawyer to file a civil claim? Those are published online

B.C. bus driver loses case to get job back after texting while driving full bus

An arbitator ruled that Tim Wesman’s phone usage was a “a reckless disregard for public safety”

Most Read