An Interlake family is raising funds and awareness for the HSC Winnipeg Children’s Hospital this May through the Million Reasons Run.
Million Reasons Run participant Dana Robinson and her family recently moved to East Selkirk after previously residing in Warren. This will be her third year taking part in the run following her three-year-old daughter Nellie’s diagnosis with Xia-Gibbs Syndrome in December 2023.
“Nellie is a super happy girl who loves to be with and watch others,” Robinson said. “She loves to swing, swim and play with bubbles, and has taught our family to slow down and enjoy the small things in life.”
Xia-Gibbs Syndrome is a rare genetic disorder caused by a mutation of the AHDC1 gene. First identified in 2014, the Xia-Gibbs Society estimates only about 390 diagnoses have been made worldwide since its discovery.
Xia-Gibbs Syndrome affects the entire body, with symptoms including developmental delays, low muscle tone and intellectual impairments, although symptoms and severity vary from person to person.
Robinson first noticed Nellie’s low muscle tone when she was three months old after she was unable to sit or hold her head up independently. While prenatal testing identified that Nellie would have some differences, doctors were not completely sure what the diagnosis would involve.
After she was born, Nellie spent one week in the NICU at HSC Winnipeg Children’s Hospital and underwent genetic testing, which showed she had some genetic differences. When she was three months old, further advanced testing led to the Xia-Gibbs diagnosis.
“At first, it was relieving knowing we finally had answers and had a direction we could head in for supports,” Robinson recalled of receiving the diagnosis. “It was also really scary because we didn’t know anyone who had gone through this. We felt alone and it was really tough navigating through this life-impacting information.”
Nellie participates in physical, occupational and speech therapy every six to eight weeks and is working with staff at the Specialized Services for Children and Youth centre to receive adaptive equipment such as a walker, stander and ankle-foot orthoses (AFOs). She only recently began sitting up unassisted and still needs to be carried or pushed in a stroller to get around.
Despite the delays, every milestone she reaches is a moment to celebrate.
“It’s shown us to celebrate the positives in each day, whether big or small,” Robinson said. “Every time she shows us she can do something is exciting and motivates us to keep working hard for her. Even though it’s taken three years, her journey has been really inspiring.”
Much of Nellie’s testing has taken place at HSC Winnipeg Children’s Hospital, including appointments with several specialists and surgery. Robinson said the support they have received from the health-care team has been phenomenal, and she wants to give back to the foundation any way she can.
“Right from the beginning, they’ve been there for us, and now it is time for us to be there for them. Anything that can help make the experience better is really important to me.”
As a full-time teacher, Robinson said she has always felt drawn to supporting charities and fundraisers benefiting youth. After receiving Nellie’s diagnosis, she said it made sense to enrol in the Million Reasons Run, a Canada-wide fundraising event supporting local children’s hospitals.
Participants set fundraising and distance goals for the month of May, rallying support from friends, family and community members. Robinson has pledged to run 75 kilometres and raise $1,500 this month. Since first joining the Million Reasons Run in 2024, she has raised $4,255.98 for the Children’s Hospital Foundation of Manitoba. She said the support she has received has already exceeded her expectations, and she is striving to surpass the goals she set.
“I think about how hard Nellie works each day, and it pushes me to work hard,” she said. “Everyone knows someone who has been impacted by Children’s Hospital. This is our time to support Nellie and other kids who need their services.”
The Million Reasons Run continues until May 31, with all funds raised in Manitoba donated to the Children’s Hospital Foundation of Manitoba. To make a donation and support Robinson’s personal fundraiser page, visit Dana Robinson fundraiser page.
