All Sections All Sections Winnipeg Free Press Subscribe
Articles Read Your Balance +tax

March 4, 2021

Winnipeg
4° C, Fair

Full Forecast

Contact Us Subscribe Manage Subscription Chat with us
Log in Create Free Account Help Chat with us
    • Contact Us
    • Advertising Contact
    • Submit a News Tip
    • Subscribe to Newsletters

    • Finding your
      information

    • My Account
    • Manage my Subscription
    • Change Password

    • Grid View
    • List View
    • Compact View
    • Text Size
    • Translate

    • Log Out
    • Log in
    • Create Free Account
    • Help

    • Grid View
    • List View
    • Compact View
    • Text Size
    • Translate
  • Coronavirus Coverage
  • Replica E-Edition
    • About the E-Edition
    • Winnipeg Free Press
    • The Herald
    • The Headliner
    • The Lance
    • The Metro
    • The Sou'Wester
    • The Times
  • Above the Fold
  • Front page
  • Arts & Life
    • All Arts & Life
    • The Arts
    • Autos
    • Books
    • Book Club
    • Cannabis
    • Celebrities
    • Diversions
    • Puzzles
    • Environment
    • Events
    • Faith
    • Food & Drink
    • Your Health
    • Life & Style
    • Movies
    • Music
    • Science & Technology
    • TV
    • Travel
  • Business
    • All Business
    • Agriculture
    • Personal Finance
  • Canada
  • Local
  • Opinion
    • All Opinion
    • Analysis
    • Columnists
    • Editorials
    • Editorial Cartoons
    • Letters to the Editor
    • Send a Letter to the Editor
  • Sports
    • All Sports
    • Amateur
    • Auto Racing
    • Blue Bombers
    • Curling
    • Football
    • Goldeyes
    • Golf
    • High School
    • Hockey
    • Horse Racing
    • Winnipeg Jets
    • Manitoba Moose
    • WHL
    • MLB
    • NBA
    • Olympics
    • Soccer
  • World
  • About Us
    • About Us
    • Advertising
    • Contact Us
    • Carrier Positions & Retailer Requests
    • FP Newspapers Inc.
    • History
    • Internships
    • Job Opportunities
    • News Café
    • Privacy Policy
    • Retail Locations
    • Staff Biographies
    • Terms and Conditions
  • Archives
  • Canstar Community News
    • All Canstar Community News
    • The Headliner
    • The Herald
    • The Lance
    • The Metro
    • The Sou'wester
    • The Times
    • Sports
    • Events
    • Contact Us
    • E-Editions
  • Classifieds
  • Contests
  • Coupons
    • All Coupons
    • Staples Copy & Print Coupons
    • Ripley's Aquariums Coupons
    • The Bay Coupons
    • Staples Canada Coupons
    • Altitude Sports Coupons
    • Nike Coupons
    • Tuango Coupons
    • Ebay Canada Coupons
    • Sport Chek Coupons
    • Roots Coupons
  • Sponsored
    • Publications
    • Sponsored Articles
  • Flyers
  • Homes
    • Property Listings
    • Featured News
    • Renovation and design
    • New homes
    • Resale homes
  • Newsletters
  • Obituaries
  • Puzzles
  • Photostore
  • More

©2021 FP Newspaper Inc.

Close
  • Quick Links

    • Coronavirus Coverage
    • Above the Fold
    • Home
    • Local
    • Canada
    • World
    • Classifieds
    • Special Coverage
    • Flyers
    • Newsletters
    • Obituaries
    • Photostore
    • Archives
    • Contests
    • Publications
    • Sponsored Content
    • Privacy Policy

    Ways to support us

    • Pay it Forward program
    • Subscribe
    • Day Pass
    • Read Now Pay later
  • Replica E-Edition

    • About the E-Edition
    • Winnipeg Free Press
    • The Herald
    • The Headliner
    • The Lance
    • The Metro
    • The Sou'Wester
    • The Times

    Business

    • All Business
    • Agriculture
    • Personal Finance
  • Arts & Life

    • All Arts & Life
    • The Arts
    • Autos
    • Books
    • Cannabis
    • Celebrities
    • Diversions
    • Puzzles
    • Environment
    • Events
    • Faith
    • Food & Drink
    • Your Health
    • Life & Style
    • Movies
    • Music
    • Science & Technology
    • TV
    • Travel
  • Sports

    • All Sports
    • Amateur
    • Auto Racing
    • Blue Bombers
    • Curling
    • Football
    • Goldeyes
    • Golf
    • High School
    • Hockey
    • Horse Racing
    • Winnipeg Jets
    • Manitoba Moose
    • WHL
    • MLB
    • NBA
    • Olympics
    • Soccer
  • Opinion

    • All Opinion
    • Analysis
    • Columnists
    • Editorials
    • Editorial Cartoons
    • Letters to the Editor
    • Send a Letter to the Editor

    Media

    • All Media
    • Photo Galleries
    • Videos

    Homes

    • Property Listings
    • Featured News
    • Renovation and design
    • New homes
    • Resale homes
  • Canstar Community News

    • All Canstar Community News
    • The Headliner
    • The Herald
    • The Lance
    • The Metro
    • The Sou'wester
    • The Times
    • Sports
    • Events
    • Contact Us
    • E-Editions
  • Coupons

    • All Coupons
    • Staples Copy & Print Coupons
    • Ripley's Aquariums Coupons
    • The Bay Coupons
    • Staples Canada Coupons
    • Altitude Sports Coupons
    • Nike Coupons
    • Tuango Coupons
    • Ebay Canada Coupons
    • Sport Chek Coupons
    • Roots Coupons
  • About Us

    • About Us
    • Advertising
    • Contact Us
    • Carrier Positions & Retailer Requests
    • FP Newspapers Inc.
    • History
    • Internships
    • Job Opportunities
    • News Café
    • Privacy Policy
    • Retail Locations
    • Staff Biographies
    • Terms and Conditions
Canstar Community News
  • The Herald
  • The Lance
  • The Sou'wester
  • The Metro
  • The Times
  • The Headliner
  • Sports
  • Correspondents
  • Columns
  • Contact Us
  • E-Edition
  • Publications
  • Building Unity: Our Community Centres

Advertisement

Advertise With Us

Walk, run and roll on Sept. 22

Event being held in support of families affected by Leigh syndrome

Simon Fuller By: Simon Fuller
Posted: 4:30 PM CDT Monday, Sep. 16, 2019

  • Tweet
  • Share
  • Print
  • Email

Gisèle Hansen is encouraging community members to show their support for the first Winnipeg Walk-Run-Roll event on Sept. 22.

Hey there, time traveller!
This article was published 16/9/2019 (534 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.

Gisele Hansen's grandson, Aiden, is pictured around a year ago.

SUPPLIED PHOTO

Gisele Hansen's grandson, Aiden, is pictured around a year ago.


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.

Stay informed

The latest updates on the novel coronavirus and COVID-19.

Subscribe to COVID-19 Briefing
Sign Up


"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 gisele.h@shaw.ca to connect.

Simon Fuller

Simon Fuller
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.

   Read full biography

Advertisement

Advertise With Us

  • Report Error
  • Submit a Tip
  • Refund

The Winnipeg Free Press invites you to share your opinion on this story in a letter to the editor. A selection of letters to the editor are published daily.

To submit a letter:
• fill out the form on this page, or
• email letters@freepress.mb.ca, or
• mail Letters to the Editor, 1355 Mountain Avenue, Winnipeg, Manitoba, R2X 3B6.

Letters must include the writer’s full name, address, and a daytime phone number. Letters are edited for length and clarity.

Advertisement

Advertise With Us

Top