Rebecca English is almost six years old. She’s never been invited to a birthday party.
It’s not that she lacks friends or playmates, explains her father Howie. Rebecca has Down Syndrome, and that scares some of their parents.
So to help overcome some of those fears and raise awareness about Down Syndrome, Howie is embarking on his second Sky Walk, from his home in Maple Ridge to the Down Syndrome Research Foundation in North Burnaby, on March 23. The 21-mile trek is fitting as Trisomy 21 is the technical term for the genetic anomaly of an extra 21st chromosome that results in physical and developmental challenges.
English says when doctors at the hospital informed he and his wife of their daughter’s Down Syndrome and some medical issues that could limit her life expectancy, he was initially overwhelmed. But after catching his breath, he was ready to tackle the challenges that lay before his family.
“I realized what a special child I have,” says English, who owns Kaplan’s Deli in Vancouver. “They’re your life, you do anything for them.”
One of those things was connecting with DSRF, who were able to map out a plan for Rebecca, hook her up with medical and community resources.
“You’re not alone,” says English. “My eyes welled up with the understanding of what we needed to do for our daughter, the great things we can achieve with her.”
Now a vivacious little girl, Rebecca attends elementary school with her two siblings. But getting to that point hasn’t always been easy, says English.
Support hasn’t always been available, resources are sometimes limited by budget constraints.
“You find out about all the inadequacies in our system,” says English. “People want to help, but there’s not enough money.”
That’s how he got the idea for his Sky Walk.
Last year he trekked 167 kilometres from Pitt Meadows to Whistler. It took him 31 hours, but he was able to raise thousands of dollars for the DSRF and the Lower Mainland Down Syndrome Society.
“It was the most painful thing I’ve ever done,” says English of that effort.
This year’s walk is a little more modest, but no less arduous. To prepare, English has been bookending his 14-hour days at his restaurant with hour-long walks around a track in Coquitlam in all kinds of weather.
English says his goal is to raise $10,000 for the DSRF. But more importantly, he wants to send a message of solidarity with other families facing the challenges of bringing up a child with Down Syndrome as well raise awareness in the community.
“Awareness is everything,” says English.
The second annual Sky Walk will conclude at the Down Syndrome Research Foundation, 1409 Sperling Ave., with a finish line celebration at 12:30 p.m. March 23, followed by a community barbecue.
To donate online go to www.dsrf.org/skywalk