Not everyone that dies alone during the pandemic has COVID-19, said bereaved mother Rose Ducharme, but some people are dying alone because of it anyway.
That includes her son, Adam Aelick, who sadly passed away at Health Sciences North on April 16, at the age of 22.*
"I wasn't able to hold his hand because of COVID,” she said. “I wasn't able to give him a hug because of COVID. Even if you have one cough, stay home."
Ducharme said she bid farewell to her son from behind a glass wall, with only a phone to connect them and the hand of a caring nurse to place against hers.
Saying goodbye to Aelick was something she wasn’t prepared to do, but doing so from a distance was simply unimaginable.
Ducharme told Sudbury.com her son was born with something called 22q11.2 Deletion Syndrome, more commonly referred to as 22q, a condition caused by the deletion of a small piece of chromosome 22 in a location designated as q11.2.
The impacts of this chromosonal deletion are wide and varied, with more than 180 signs and symptoms associated with the syndrome.
In Aelick, 22q manifested in distinctive facial features, low muscle tone and heart abnormalities, and eventually led to him developing learning disabilities, depression and anxiety.
He underwent two open-heart surgeries by the age of six, which, coupled with numerous bouts of pneumonia, meant he spent a considerable amount of time in the hospital at a young age and into his later years.
It was a challenging time, but for a child growing up with the syndrome, it was more easily described to her son as a glitch, in reference to the movie “Lilo and Stitch 2: Stitch Has a Glitch.” Whether it was this normative narrative or a sense of peace within himself, Ducharme could not say, but he never complained, no matter what life threw at him.
Once he was well and old enough to do so, Aleick attended French school with his sister, Miranda. He didn’t let the verbal challenges experienced by many with 22q hold him back. There, he became the first life skills student in the school's history to re-integrate himself into mainstream education and eventually graduate with a diploma.
He was used to overcoming life's challenges, Ducharme said, up to and including learning guitar without the ability to play by ear or read music. Nothing, however, compared to the confidence he gained from his success in high school.
His newfound sense of purpose propelled him into a three-year journey of self-discovery, where, through the help of Club Kodiak, an annual 22q family conference, and visits to a specialized clinic in Toronto, Aelick began to understand the true extent of what he was capable of.
Aelick always knew he was different, his mother said, and it took a long while for him to accept and find pride in that. But once he had the opportunity to meet other individuals similar to him, and find suitable social and psychological support, there was no holding him back.
Ducharme described her son as a fighter, committed to his development, raising awareness for 22q and above all, spreading positivity. He even created a YouTube and Facebook page dedicated to his work as a 22q advocate, which he used to document his experiences, share those of others and encourage relationship building among the 22q community.
Through these social media platforms, an international community of more than 1,000 active participants was formed and a new side of Aelick was revealed. Finally, Ducharme said, he had an outlet to share his voice, a group of friends to relate to, and inspiration to change the world around him.
He was a shining star, she said, but in the end, his star shone too brightly.
At the time of his passing, Aelick was awaiting surgery for repair of a leaky valve in his heart and had a compromised immune system, which Ducharme said made him very susceptible to infection.
Ducharme said doctors believe Aelick contracted a respiratory infection and developed sepsis, which resulted in him going into cardiac arrest. Test results confirmed Aelick did not have COVID-19.
He was transported by ambulance to the hospital in the early afternoon of April 16, after his father, Randy Aelick, stopped in to visit and found the young man was having serious breathing problems. Aelick was then immediately placed in intensive care, where neither his mother or father could join him.
Ducharme stayed at the hospital for a short while, but eventually left, only to be called back that evening when she was informed of Aelick's deteriorating condition.
She was later joined behind the glass wall separating them from Aelick by her parents, Lily and Rheal Ducharme. Neither Aelick’s sister nor his father made it in time to say their final goodbyes.
The family was beyond heartbroken that they couldn’t be at Aelick’s bedside as he died, but instead were forced to stand outside and watch him through glass.
Ducharme was particularly heartbroken because she said her son had tested negative for COVID-19 just a few days prior to him being admitted.
As part of safety measures put in place by Ontario hospitals, visitors are restricted from the room of any patient under investigation for COVID-19 and awaiting test results, or any patient has tested positive for the virus, said Health Sciences North when asked about Aelick’s passing.
"While we understand how difficult this can be for visitors, these measures are necessary to limit any potential for the spreading of infection," said Jason Turnbull, media specialist on behalf of HSN.
In a statement, HSN said it will continue to review the policies in place for the protection of patients, staff and visitors during the pandemic to ensure safety and enhance the experience for visitors.
The experience was tragic, but like all stars, Ducharme said her beloved son will continue to shine, not only through his work as an advocate but in the lives he touched with his kindness, generosity and positivity.
"We are grateful to HSN and the ICU nurses who cared for him, and held his hand when we could not," the family said in a statement to Sudbury.com. "We also understand and respect the policies and procedures, as heartbreaking as it was."
He is to be memorialized by the 22q Foundation through the creation of Adam's Advocacy Award, with more details to be released in the near future.
Find more information on Adam Aelick and his mission through his Facebook Page, 22q Positivity.
*An earlier version of this story stated Adam Aelick passed away April 14. That has been corrected.