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.