A Cookstown mother is fighting for her son’s life as he battles respiratory syncytial virus (RSV) at the Hospital for Sick Children (SickKids).
Three-year-old George Dempsey has been in the pulmonary intensive care unit for weeks as his mother, Lauren, does everything she can to get him a special exemption to allow for him to receive the RSV vaccine.
Typically, the RSV vaccine program phases out at around age two, but since George had been previously hospitalized at SickKids in the intensive care unit with RSV in 2020 and and it was discovered he had an undiagnosed genetic neuromuscular condition, he had special exemptions to receive it each year.
“It came back that he has this very rare form of SMA (spinal muscular atrophy), and the doctor said that now that he had a diagnosis, we can get him the RSV vaccine,” said Lauren.
This year, Lauren sent in the applications, as well as a secondary application under a special circumstances form, as well as a letter from SickKids and information from Royal Victoria Regional Health Centre (RVH) verifying George's past health records.
“The SickKids letter said that any RSV contraction from him would result in a severe pulmonary event. They outlined exactly why it’s life or death for George to get this vaccine,” explained Lauren.
At the end of September, the government sent a letter back saying George’s special exemption for the vaccine was denied.
George caught RSV in October, went to RVH and was then sent to SickKids in Toronto.
“He was intubated and then extubated and then, a couple of days later, intubated again. Now, he’s been extubated again and it’s a wait-and-see to see how his body fights the virus off on its own,” said Lauren.
George is now testing negative for the virus, which means if he gets approval for the vaccine, his body will be ready to receive it.
“He’s still got the gunk in his lungs from RSV, which is causing him to have these collapsed lungs,” said Lauren. “They’re trying to figure out what the best combination of resting and suction is for him to be able to get back to normal lung function.”
At SickKids, George is followed by a number of teams, including the neuromuscular team, who have talked to the lead doctors of SickKids and sent an appeal application for the vaccine.
“It’s saying that this kid is in the ICU with this and that we need to protect him further,” said Lauren. “I’m still waiting to find out what the result of that was and I’ve been following up trying to figure out where things stand. In the meantime, I’ve been writing to all of the MPPs in Ontario saying that someone needs to address this because he can’t be the only kid in this situation.”
Lauren is doing everything she can to bring attention to the situation, not just for George, but for others who may find themselves in a similar circumstance.
“I’m hoping, by bringing awareness to the issue, people will realize that there actually is a vaccine for this and that it’s just very selective on who actually gets it,” she said.
“My hope is to bring awareness to force the government to look at this and look at how it was the wrong decision. I don’t think he should have been denied, and his hospital admission is proving he should have received this. I don’t think it ever should have gotten this far. Whoever made this decision clearly didn’t look at George’s file.”
The most perplexing part of it all for Lauren is George’s medical history would have made it clear to see why he needed the vaccine approval. That’s why she wants to continue to raise awareness about the process.
“This should have never been a question,” she said. “My goal is to get George the vaccine for the remainder of this year, at least, and then I’ll focus on having the review changed. I don’t understand how you have all these medically complex kids who spent the last two years in isolation and then sent them off to school for the first time in this Petri dish of germs and you’re not giving them the proper tools. The government should have looked at it and opened up the eligibility criteria two or three years post-COVID to help limit the impact on the hospitals.”
Although it started off as her fighting for George, Lauren has realized how problematic the whole process is, and that’s why she doesn’t plan to stop bringing attention to it.
“I needed to do something because I’ve never had something so wrong with the government affect me in such a direct way,” she said. “There’s got to be other kids who have been denied the vaccine but haven’t gotten RSV that see this and know they can do something about it.”
She and those around her are fighting for George, with an online petition started to help George get approved for the vaccine by his fourth birthday on Nov. 23.
“RSV has blown up in the hospitals, and to think you could have helped protect the most vulnerable, the ones that would be in the hospitals, I just don’t understand, and it doesn’t make sense. I want there to be some form of change when it comes to these little kids,” she said.