Then and now: How Bear Essentials is improving Jackson’s life
Jackson, called “Jax” by his family and friends, has an infectious laugh and an amazing “go with the flow” attitude. A happy twelve-year old, Jax lives with his parents Tracey and Chad, and attends Middle School on the Saanich Peninsula. He’s nonverbal and has cerebral palsy, spastic diplegia, and autism spectrum disorder. “This is Jackson’s life and he finds so much joy in sitting on the grass outside, or in the sun,” says his mom, Tracey. “He loves to “read” books, flipping through the pages on his own, as well as watching You Tube videos on his iPad.”
When Jax was three, he began having epileptic seizures and the family made frequent 911 calls that resulted in advanced life support. There were ambulance rides and emergency visits to the hospital and test after test to try to discover the cause. Tracey describes, “Jax took everything in stride. We were flying down the highway in the ambulance and the paramedics were starting the IV and Jax was so calm while Chad and I were terrified. Then we kept returning to the hospital for blood work, EKGs, MRIs, every X-ray and every test possible, trying to arrive at a diagnosis.”
The search for the cause of Jackson’s complex health challenges lasted for nine years.
After years of tests, the family was given the opportunity to take part in a genetics clinical trial. Last year it was discovered that Jax has a chromosome abnormality — the middle of his second chromosome inverted itself when Jax was developing in the womb. Jax and his family continue to face more tests to discover how this will affect Jax’s future.
Tracey and Chad are faced with a dilemma all too familiar for parents of kids who need special equipment; the cost is beyond their means. “When Jax was first diagnosed I was panicking; what am I going do? I had no idea where to go for help,” Tracey explains. “Then one day a therapist at the Queen Alexandra Centre mentioned Bear Essentials. Well, it’s changed our lives, it really has. And we’re so grateful.”
The first funding that Jax and his family received from Bear Essentials was for Ankle Foot Orthoses to accommodate his extra wide and deep footwear. Because of the special orthotics Jax was able to stand and begin to take steps with a walker.
As Jax outgrew his wheelchair, started school, and became too big for his dad to carry safely, new equipment was needed. “The therapist explains what Jackson needs and we wonder how we’ll find a way to get the equipment. Then the therapist applies to Bear Essentials on our behalf and comes back to us with the great news that the application has been approved”, says Tracey. “It’s an overwhelming relief. I feel so lucky when I’m allotted something for Jax that will improve his life — all the things that we need, and that he’s going to need. It’s wonderful to know that the Bear Essentials program is here to help.”
When asked how our donors can help families like hers, Tracey says, “Your donation, however small, makes a big impact on families like ours. Jax needs this, so please help a child or children with a small or big donation. You’re helping a child improve their life and isn’t that a great thing to do?”
This is the first installment of Jackson’s story. To be continued…
Bear Essentials is a family support program to assist with the costs of a child’s health related equipment and travel. The program is funded entirely by donations.