SUMMERSIDE, P.E.I. - When Stacey Gallant found out her son has a rare and debilitating genetic disease her world turned upside down.
“We were shocked because we had never heard of this disease before, but it was good to know what was making Dakota’s walking difficult, his hands shake, including taking longer to do normal tasks.” She motioned, “He wears braces on his legs to help with walking now.”
Friedreich’s ataxia (FA) is a rare neurodegenerative disorder that affects movement, and gradually worsens over time causing muscles to weaken and waste away.
“Me and his dad both carry the same gene, so that’s what gave it to him. If only one of us had the gene then he wouldn’t have got it,” she said as her heart sank remembering the day in 2016 when the doctor diagnosed her 9-year-old son with FA.
There is no cure for FA, although there is management of the disease.
The family were connected to Michelle Moore, who has a son with the same rare hereditary disease.
Moore informed Gallant that her son qualified for a wish with the P.E.I. Chapter of the Children’s Wish Foundation after their son, Aden, had his wish granted to spend a week in Los Angeles, California.
“Michelle got us in contact with the Children’s Wish Foundation and we were able to make Dakota’s dream come true,” smiled Gallant.
In April this year, for seven days, the family of three – father, mother and son – visited the major theme parks in Florida.
“It was so much fun,” chimed Dakota. “We went to Legoland, the Magic Kingdom...” he listed them off. “But my favourite place to see was Legoland because of the huge sculptures that were created from the tiny bricks.”
On Saturday afternoon the families flocked together to participate in the Summerside Children’s Wishmaker Walk to help raise funds to grant other wishes to children living with a life-threatening illness.
“This is our third time participating in the walk because once we started working with the P.E.I. Chapter we got to see how much they do for the kids and we wanted to give back,” said Gallant.
The walk kicked off at Pizza Delight on Saturday at 2 p.m.
“After the walk, which circles the County Fair Mall, we return to Pizza Delight and have pizza, garlic fingers and pop. There are also lots of children’s activities such as masks to decorate and colouring, so it’s a nice gathering,” remarked Rebecca Curley, one of the organizers on the committee of six.
Children’s wishes can range from campers, beautiful backyard play sets, trips, and almost anything that’s not a vehicle.
For more information on the event or to donate, visit www.childrenswish.ca.
