'He was really joyful': Saskatchewan family remembers toddler who fought rare genetic disease
Published Wednesday, April 15, 2020 9:00PM CST Last Updated Wednesday, April 15, 2020 11:24PM CST
SASAKTOON -- His parents were told they may only get to spend one month with their baby, but he gave them 22.
Just two months shy of his second birthday, Emmet Steadman died on April 10 from complications related to nephronophthisis, a rare genetic disorder that attacks the kidneys.
"My understanding was that it was a very peaceful moment for the family, very blessed to have Emmet’s last moments together with him," Emmet's great-aunt Melinda Saretzky said.
Many followed Emmet on his journey with his family turning to social media to share photos, videos and — perhaps most importantly — his story, hoping to raise the profile of the devastating illness the boy struggled with.
“I also want to raise awareness for organ donation and hopefully get more people involved,” Emmet’s mom, Brittney Skorlatowski said during an interview in January of 2019.
At the time, Skorlatowski and Emmet's father, Chase were giving their seven-month-old baby kidney dialysis for 12 hours a night as the family waited for a suitable donor that could provide their child with a single kidney and part of a liver through a living transplant.
Saretzky, who made the trip from her home in B.C. to support the family during this difficult time, said an organ donation was in sight for Emmet but ultimately didn't come to fruition.
"Some other things just happened and we couldn’t go through with it so it was just unfortunate but that’s the way it happened," she said.
Saretzky says she'll remember Emmet's smiles and laughter, and how mischievous he could be.
"He was very sneaky and a jokester. He would throw things and push things off the table. He was very alert and happy that he was alive," she said.
"He was really joyful and brought that through to his family."
On Monday the family held a viewing for Emmet at Saskatoon Funeral Home.
Because of restrictions on the size of gatherings during the COVID-19 pandemic, those wanting to express condolences drove through the breezeway out front, speaking to Emmet’s family, who were sitting inside, over cellphones.
"It’s a testament to the family community, and just humankind in general, they want to lend their support and show their support,” funeral manager Morgan Edwards said.
Emmet's memorial service was live-streamed online Wednesday afternoon, the chapel empty because of the pandemic. Colourful balloons floated above the pews.
Like so much else in his life, anyone was invited to share in the experience, even if they had never met him in person.
For those that did have the chance to meet Emmet, Saretzky said it was unforgettable feeling.
"It’s so hard to explain what it's like to be in his presence. He just radiates joy,"
With files from CTV News Saskatoon's Francois Biber