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Vaccine battle highlights challenge facing special needs families

Mom says three-year-old George Dempsey, who has been fighting RSV in the hospital for the past month, is home and scheduled to get the vaccine he was initially denied

Lauren Dempsey is relieved after her toddler son was approved for the respiratory syncytial virus (RSV) vaccine after initially being denied earlier this fall.

Three-year-old George Dempsey was in the pulmonary intensive care unit for weeks at Sick Kids hospital in Toronto after contracting the virus in October. He was finally able to come home last week and was approved for the vaccine Friday.

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 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,” the Cookstown mother said in a previous interview.

In August, Dempsey 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 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,” she said.

At the end of September, the government sent a letter saying George’s special exemption for the vaccine was denied.

Shortly after, George contracted the virus, which is how he ended up at SickKids.

While at SickKids, Dempsey did all she could to help her son. At SickKids, George is followed by a number of teams, including the neuromuscular team, who talked to the lead doctors of the hospital and sent an appeal application for the vaccine.

Dempsey also started a petition, rallying the community and other families in similar situations, urging the government to re-evaluate the vaccine approval process.

In an update on the petition website today, Dempsey shared that George was approved for the vaccine and thanked everyone who signed, and helped her son.

“Thank you everyone for your support and attention to this. We sincerely appreciate the time you took to read this petition, sign it and share it,” she wrote. “Without your support and advocacy this wouldn’t have been possible.”

On Tuesday, Dempsey she has not received any follow-up from the Ministry of Health regarding the situation explaining why her son’s application was denied in the first place.

“They haven’t picked up the phone, apologized — nothing,” she said.

But right now she isn’t too concerned and is just happy her son is feeling better and he has the vaccine approval.

“This was our first weekend at home and it was my husband's birthday on Saturday so it was perfect timing,” she said.

She added George is doing well since being discharged.

“He’s feeling good. He’s looking good,” said Lauren.

George turns four tomorrow and is scheduled to receive his RSV vaccine Thursday.

Dempsey wants her son’s story to help raise awareness of the red tape special needs families face.

“There are these resources out there that the government withholds, and I made an intentional point to be very transparent in this because I wanted people to really see the amount of work that goes into just trying to get a vaccine,” she said.

“The fight for getting special needs children the protection they need for these viruses isn’t over,” Dempsey wrote in her petition message. “The program, criteria and decision makers need to change. The government has the power to protect them even a little bit and give them a chance at a more ‘normal’ life — that decision should not be in the hands of politicians. It should be in the hands of qualified medical doctors who know and treat the kids.”

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Natasha Philpott

About the Author: Natasha Philpott

Natasha is the Editor for BradfordToday and InnisfilToday. She graduated from the Media Studies program at The University of Guelph-Humber. She lives in Bradford with her husband, two boys and two cats.
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