Jack Mally Newberry was born happy and healthy on January 7, 2012, the New Year’s baby in his hometown of Vermillion. He had unnaturally high bilirubin levels and, after many tests, Jack was diagnosed with biliary atresia on March 20, 2012. In an instant, the Newberry family was thrust into a life of surgeries, a transplant, and being uprooted from home. During the next eight months, as the family journeyed back and forth to Edmonton for Jack’s treatments, Ronald McDonald House Charities® Northern Alberta (RMHCNA) became a haven that the Newberrys called home.
Making Edmonton their temporary home did not happen easily. Jack’s parents, Jason and Dawn, did not have extended family close by, and Jack had four older siblings that needed cared. Jason pictured putting mattresses in the back of their truck as a temporary sleeping space. He wondered how they would meet all of the family’s needs with no support and no family to help. “We fix everything for our family, and we couldn’t fix where we were going to stay,” says Jason.
Jason called Dawn in tears when he first walked into RMHCNA. He told her about the incredible home of comfort that opened its doors to their family. While Jack fought his liver disease through many surgeries and even a transplant, the Newberry family stayed together at the House. Jack’s family was able to be together when they needed it most. Jason could comfort and support Dawn and Jack in the hospital, while also being assured that the older children found their own comfort at RMHCNA. While at the House, Shane, Julie, Victoria, and Noah kept up with their schooling in the classroom. New friends, field trips, one-of-a-kind experiences, and fun provided a landscape of normalcy.
When a family journeys through the illness of a child, they seek and desperately hope for the wellness of their child, and each member of the family is affected. Parents face decisions, conversations, and outcomes that no one should ever face. Understandably, they focus on the critically ill child, and the needs of siblings sometimes take second place. Our mission is to keep families close through compassionate accommodation, but also through programming to keep all House Heroes, both sick and sibling, engaged and cared for.
Jason and Dawn shared a powerful, though surprising, insight about what RMHCNA had done for their family, “RMHCNA meant that the kids didn’t have to hate Jack for being sick and stealing their family time. The friends made, the unique experiences, the baking, crafting, and field trip fun that they could enjoy, while still being a family so far from home, was their gift from Jack.”
Jack lost his battle with biliary atresia on November 26, 2012. On that day, RMHCNA was there for the family, as well. Staff and other House families played with their children so that Jason and Dawn could meet with their pastor, share memories of Jack’s life, and plan his funeral. “Even on that worst day, we weren’t alone. It’s the best House ever,” says the Newberrys.
“Jack was an amazing baby who never got the chance to grow up. He loved music, being sung to, listening to his brothers tell him stories, and watching his siblings dance. He had the ability to really look at you, and see the core of who you are. If you made a connection with Jack, this was rewarded with a smile. Jack’s smile was pure love that instantly made your mood brighter because of it. Jack loved and was loved… Isn’t that the most important thing that any person can do with their lives?”
Since losing Jack, the Newberry family has added two rainbow babies to their family, and sweet little Archie and Cleo join the family in attending our annual Share the Light tribute event that seeks to connect and comfort our RMHCNA families who have journeyed through the loss of a child. They bring laughter, smiles, and hope. They serve as a reminder: once a family, always a family, no matter how the story unfolds. This is our mission at RMHCNA.
Below Jack’s sister Julie shares a poem she wrote in honour of her brother:
Jack brave little hero
He wasn’t quite one he was Zero
He was loved by everyone
Especially mom and dad
He had nurses who loved him
Almost every day they would hug him
He was a strong little guy
When we were with him time flew by
He was a very nice little boy
His all time favourite was his iggy toy
One day he fell asleep
The next morning he saw mom and dad
Reading and sewing
That day he said
“Today I’m letting God take over, my earthly journey is over”
So we will always remember his little smile
And such a lovely child.