A Winnipeg couple is organizing an upcoming fundraiser which they hope helps other families avoid the heartbreak they had to endure three years ago.
Kristen and Mike Lucas’s daughter, Georgia, was diagnosed April 1, 2009 with Type 1 spinal muscular atrophy, a hereditary disease which causes weakness in the voluntary muscles in the arms and legs of infants and children. Three weeks later, on April 21, Georgia died at the age of six-and-a-half months.
To honour her memory her parents started the Georgia’s Journey of Hope fundraiser.
The event celebrates the memory of Georgia and raises awareness, education, and funds for SMA research. All proceeds from the event will go to Families of Spinal Muscular Atrophy Canada.
Last year, the couple were able to raise $10,000 and are hoping to top that mark this year.
This year’s fourth annual event will take place Sun., Sept. 30 from 12:30 to 4:30 p.m. at the Glenwood Community Centre, located at 27 Overton St.
Kristen, who grew up in Transcona and now lives in Island Lakes, said starting the fundraiser was a way of keeping Georgia’s memory alive.
"After Georgia died I felt like I had all of this energy, my love for Georgia, and I was grieving her loss," said Kristen, a mother of three.
"I needed some place to put all of my energy and I wanted to honour her memory."
Kristen said she and Mike are carriers of the defective gene that causes SMA and there was a 25% chance that each of their children could have had the disease.
In addition to the upcoming fundraiser, family members are knitting scarves that are being sold for $22. The scarves are being knitted by Georgia’s great aunts and her grandmother.
Betty McDowell, Georgia’s grandmother, said it was important for her to get involved in the effort.
"Right now there’s no known cure. Any child or baby diagnosed with Type 1 it’s like a death sentence," said McDowell, who lives in Transcona.
"It was horrible and I wouldn’t want any family to go through what we had to go through. It’s one of the ways to give back."
Kristen said the family is hopeful a cure can be found in the near future as human trials using gene therapy are expected to begin in 2013.
"That really means a lot to us because it feels like our efforts haven’t been for nothing. We’re actually seeing the fruits of our labour," Kristen said.
Tickets for the fundraiser are $5 and can be purchased at the door or in advance. Children two and under will be admitted free.
For advance tickets contact firstname.lastname@example.org.
To order scarves contact McDowell at email@example.com.
For more information visit www.georgialucaswpg.blogspot.ca.