John ‘Jac’

Age: 10
Hometown: Saskatoon
Condition: Down Syndrome

It’s hard to imagine that a bright-spirited and energetic kid like Jac has been through some of the most daunting medical challenges possible for someone so young. Having undergone surgery at just three months old, the Saskatoon boy knows exactly why it’s important to smile through each day.

Around 32 weeks into his mom’s pregnancy, Jac was diagnosed with an atrioventricular septal defect (AVSD), which essentially meant he had a hole in his heart. The diagnosis was also a strong indicator of Down syndrome, so doctors performed an amniocentesis to confirm. Immediately after Jac made his way into the world, he was rushed to the Neonatal Intensive Care Unit (NICU) for close monitoring of his heart.

While in the NICU, Jac developed jaundice as well as pancytopenia and thrombocytopenia, meaning he had a deficiency in red and white blood cells and low platelets. Baby Jac was so busy taking on numerous needle pokes and an NG tube, he was prevented from eating during the first week of his life and dropped one pound from his birth weight. Jac may have started life on the wrong foot, but at two weeks old he had recovered enough to go home for the first time.

“It was a really exciting time to have Jac finally home with us. We were fortunate to have surprised [my visiting family] by showing off Jac,” says Jac’s dad Francis. “We were thankful for the care the NICU provided for Jac and how they taught us; it allowed us to prepare for him to be home with us.”

But just one month later, Jac developed respiratory syncytial virus (RSV), which required another two week hospital stay. At this point, Jac was only two months old but had already spent half his life in hospital.

Jac’s parents always knew he would need heart surgery, but when he was three and a half months old, reality sunk in when they learned the surgery was booked. Though they knew he was in good hands, the family was a bundle of nerves travelling to Edmonton for Jac’s open heart surgery. It was a major surgery for a little guy, but Jac recovered remarkably well after only five days. It was then time to plan for another arrival home where he would be seen regularly by a Cardiology team in Saskatoon.

“Jac has been a trooper attending all of his appointments for the past three years,” says Francis. “For two years it seemed like an appointment every week.”

Jac now requires frequent visits to see his pediatrician, ENT specialist, ophthalmologist and the therapists at the Alvin Buckwold Child Development (ABCD) Program. In spite of it all, he has quickly grown into an incredible inspiration to those around him and always lives full of energy, smiles and laughter.

“Today Jac is a healthy and active (almost) four-year-old. He loves to swim, play soccer, take dance lessons and play with friends. Jac is able to do all of these things because of the excellent medical care he has received since he was born and the skillset he has learned from the different therapies he receives,” says Francis. “When you have a child with a disability, you tend to be uncertain with how the future may play out. All you can do is take it day by day. Every day is a great day, because Jac is worth it. Our kids are worth it.”

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