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This article was published 16/9/2019 (740 days ago), so information in it may no longer be current.
Gisèle Hansen is encouraging community members to show their support for the first Winnipeg Walk-Run-Roll event on Sept. 22.
TeamMITO Winnipeg, in collaboration with MitoCanada, is putting on the family-friendly fundraising event — which will be held at the picnic shelter at Whittier Park (836 Rue Saint Joseph) — to raise awareness and funds to support families affected by mitochondrial disease, which is also known as Leigh syndrome.
Hansen’s two-and-half-year-old grandson, Aiden, has Leigh syndrome, and she is key organizer of the upcoming event. She said MitoCanada was started in 2009 to raise awareness, support families, and provide funding for research. But while local chapters, Hansen said, are "very active in Alberta and Ontario," she has not found the same momentum in Winnipeg, so her goal is to promote a local chapter here.
"I’m hoping to organize a local chapter, so affected families can reach out and contact me," said Hansen, who lives in St. Boniface.
"A lot of people don’t know what Leigh syndrome is, and yet more children die of mitochondrial diseases than cancers. We’d like to be able to secure corporate funding for research, and we’re hoping to get the word out."
According to rarediseases.org, Leigh syndrome is described as "a rare genetic neurometabolic disorder. It’s characterized by the degeneration of the central nervous system (i.e. brain, spinal cord, and optic nerve). The symptoms of Leigh syndrome usually begin between the ages of three months and two years, but some patients do not exhibit signs and symptoms until several years later. Symptoms are associated with progressive neurological deterioration and may include loss of previously acquired motor skills, loss of appetite, vomiting, irritability, and/or seizure activity."
In Aiden’s case, Hansen said he seemed like a normal baby until approximately the age of six months.
"We had no idea there was anything seriously wrong with him, just that his development was a bit delayed. He did not yet roll over or sit up — in fact, he didn’t roll over until he was 11 months old and didn’t sit for almost another year. A month after his first birthday, he started to have infant seizures and was put on anti-seizure medication. He was also referred to a neurologist who had his blood sent to Atlanta, Georgia for DNA and mitochondrial testing," Hansen said, adding Aiden had stopped smiling and didn’t seem excited anymore.
"He made a few trips to the emergency and ended up in hospital on separate occasions with uncontrollable seizures and then a viral infection. Aiden couldn’t support his head and neck, and he had lost his ability to suck. He had really deteriorated."
Eventually, Aiden’s condition improved, and five months after his diagnosis he figured out a way to get into a sitting position. The living room floor at Hansen’s daughter’s house is covered in gym mats so that Aiden doesn’t hurt himself.
"He’s now doing better than expected, so this point he’s beating the odds," Hansen said. She expressed gratitude on behalf of the family for the help and support of the therapists at the Specialized Services for Children and Youth in Winnipeg.
"He’s a determined little fellow."
Hansen, a nurse, said there is a research team at the St. Boniface Research Centre, under the direction of Dr. Benedict Albensi, that’s doing research into mitochondrial dysfunction. Individuals can visit mitocanada.org or stbhf.ca/en/donate and ask that their donation go to Dr. Albensi’s research.
Go online at mitocanada.org for more information. Anyone wishing to reach out to Hansen can email her at firstname.lastname@example.org to connect.
The Lance community journalist
Simon Fuller is the community journalist for The Lance. Canstar’s senior reporter, he joined the team in June 2009 to write for The Sou’wester, which was then the new paper in the Canstar family.