Guelph-Wellington Ambassador (2019-2020)
A Spring Update
Jackson is a hero to his parents, Chuck and Alice. This energetic seven-year-old met all the expected milestones as a baby - he slept and nursed normally, giggled and smiled. He even won the Erin Fall Fair’s Cutest Baby Contest dressed up as a pea pod. But less than six months into parenthood, nothing prepared them for what happened next.
“Jackson became very sick and was admitted to hospital.” Alice shared. “It was a very stressful time. There were so many tests. CT scans. EEGs. ECGs. A spinal tap, muscle biopsy and numerous blood tests. An MRI revealed stroke-like lesions on Jackson’s brain. The affect of the stroke left his entire right-side weak and he had limited control of his tongue and mouth.”
Testing results diagnosed Jackson with Leigh’s Disease, a rare mitochondrial disease that robs the energy from the body’s cells. There is no cure. His current defence is a daily treatment of specific vitamins to help his cells function and his energy levels stable.
At the age of one, Jackson and his family arrived at KidsAbility.
“I’ll always remember our first meeting with the KidsAbility team in Guelph. Chuck and I were greeted by a whole team of professionals whose singular focus was to start a game plan of therapies to make Jackson’s life better. I remember leaving that day feeling for the first time that Chuck and I were not alone in this journey.”
Occupational therapy was the first focus for Jackson. With the therapists’ help, Jackson learned to safely drink and eat and he was soon able to sit unaided, to roll over, and eventually to crawl. By two, Jackson was attending weekly visits with his physiotherapist, Amy, where they worked together to strengthen his core to stand and walk.
One particular visit stands out as a pivotal moment for Alice in those early years.
“Amy positioned Jackson against a mirror in a treatment room. Suddenly, I witnessed my son standing by himself for the first time. It lasted about 3 seconds, but to me it was a miracle.”
After that, there were many trips back and forth to see Amy. She became Jackson’s new physio friend, a part of the family. With her support, Jackson worked tirelessly to learn how to walk, run, and use adaptive devices to enjoy pool time.
“Once Amy determined the right adaptive bike for Jackson, he began riding a trike as fast as he could around the KidsAbility parking lot with Amy running behind to keep up. You can just imagine the giggles and look of joy on his face.”
At this time, Jackson’s world was a silent one as he was still non-verbal at the age of 3. To help him explore his world, Jackson began community daycare a couple of mornings a week. His KidsAbility team followed him there as well. Monthly visits ensured Jackson had the tools he needed to be successful to participate with his peers, including special chairs to sit in for circle and snack time.
Jackson also began meeting with the Augmentative Communication team at KidsAbility. Working together, they helped Jackson with tools which allowed him to share his thoughts with his family.
Armed with a simple device of recordable buttons each with its own picture, Chuck and Alice personalized its settings to give Jackson a voice. With the press of a button, Jackson could share what he wanted – like a toy, or pizza for dinner. He was delighted to say ‘Trick or Treat’ at Halloween for the first time.
Today, Jackson navigates an iPad with ease and can express himself in sentences or answer a question in his classroom.
“We are so incredibly thankful to our KidsAbility family,” shares Alice. “I can’t imagine where we would be without them.”
Looking for a challenge a few years ago, the family participated in the KidsAbility Guelph Superhero Run.
“Our team name was after our own Superhero, “Action Jackson,” a loving nickname given by his uncle for Jackson’s energetic spunk. At the run, we found we were not alone in our challenges and we saw so many kids with a wide variety of needs. All of them had a smile on their faces. It was their day to have fun. It was at this point that we realized we had to do more.”
Today, Alice, Chuck and Jackson are an Ambassador Family of KidsAbility, eagerly sharing Jackson’s story with the wider community. They also hold the title of Top Fundraising Team of the Guelph Superhero Run in support of KidsAbility from a culmination of donations and encouragement gathered from their family, friends and neighbors.
And while the Superhero Run is currently on hold for this year, Alice carries a particular memory deep in her heart.
“This past year was a highlight for us. Jackson proudly ran across the finish line with many team members loudly cheering him on. He is truly our hero.”
With your support, it's possible for children like Jackson to receive the therapy they need to reach milestones and goal important to them. Your gift will help make a difference in the lives of children and youth with special needs.