Sherrie Brown was blissfully unaware that she was carrying a gene that ended both of her sons’ lives.
Brown, 51, gave birth to two sons 15 months apart. But after her sons, Evan and Dustin, were born she noticed that they weren’t developing properly and was jilted by the diagnosis.
The boys were diagnosed with a genetic disorder called MEC-P2-Duplication Syndrome, a syndrome that is exclusive to males. As a result of the illness, her children passed away 15 months apart five years ago.
Their passing will be grieved by Sherrie and the bereavement support group—Compassionate Friends—this Saturday at the fourth annual Walk to Remember and Balloon Release in Gyro Park.
“Dustin was 22 when he died (in 2007),” Sherrie said, “It was tough.
“When Dustin went, Evan started to decline so we knew what he was facing and I was trying to grieve for Dustin, but I was trying to take care of Evan.”
According to the National Center for Biotechnology Information, MECP2 duplication syndrome is a severe neurodevelopmental disorder characterized by infantile hypotonia, severe mental retardation, poor speech development, progressive spasticity, recurrent respiratory infections and seizures.
The bereavement support group introduced Sherrie to many women who have lost children, including Marilyn Wright, 56, who lost her son (Shane, 24) from a blood clot in his lungs.
“After he passed,” said Wright, “we found out that I could have been the carrier of a bad gene.”
Wright hosts meetings for members of the group who have lost their children at her home in Fruitvale.
“It’s not a group that you want to be a part of,” Wright said. “But, people who haven’t been through it don’t understand. It’s not like we want to recruit members.”
Compassionate Friends of Canada is an internationally recognized self-help group that helps parents to acknowledge the loss of their child, confront grief and receive ongoing support from others.
The bereavement group welcomes friends and family members who want to understand the physical and emotional effects of grief.
“We have a dark sense of humor,” said Joan Sheloff, an event organizer who is mourning the loss of her eight-year-old grandson. “I think you have to, it’s a coping mechanism. “We’re not going to change the subject and we’ve been through it—it’s not like it’s contagious (and) we can teach people how to be supportive too.”
The bereavement support group holds meetings on the last Monday of the month at 1280 Columbia Gardens Rd. at 1 p.m. in Fruitvale. For more information about the group’s initiatives, visit www.tcfcanada.net or call 250-693-2281.
On Saturday, you can show support for friends and families at the fourth annual Walk to Remember and Balloon Release.
The vigil will begin in Gyro Park at 10 a.m. where the group will walk through Sunningdale and return to Gyro Park to release biodegradable balloons with messages to their children.
There is no admission fee and everybody is welcome to attend.