PALMERSTON – A local youth is responding well after receiving experimental treatment for a rare disorder during a 15-week sojourn in Europe.
Ten-year-old Jasper More, who was diagnosed with MPS in 2011, was just the seventh person to undergo a new gene therapy regimen, which involves a one-time cell infusion followed by weeks of monitoring and tests.
Jasper, along with his mother Pam and siblings Daphne and Clayton, returned on Jan. 25 from Naples, Italy, where Jasper received the treatment as part of a clinical trial.
MPS is a progressive condition that causes many tissues and organs to enlarge and become inflamed or scarred. Affecting about 1,000 people in the world and about 15 in Canada, MPS can also cause skeletal abnormalities.
Pam said the experimental treatments went very well.
“They went great. They went beyond what I’d even hoped they would. He’s responding really well to the treatment,” she told the Community News in a Feb. 17 interview.
Jasper received a higher dosage of the injections than previous patients, “so he is responding in line with that,” Pam said.
While the news is good, Pam pointed out, “We have to return to Italy every six months for the next three years for them to check and monitor.”
However, future trips will be only four or five days long.
“We don’t have to go for a prolonged stay again, thankfully,” said Pam.
After the initial injection, the program consisted of monitoring and testing, so the family was able to do some sightseeing.
“He was in hospital for a week … and then after he was released we had to go back once week, and then beyond that, the time really was ours,” Pam stated. “Of course the kids were doing schooling online so we had to fit that in.”
Jasper’s sister Daphne was taking three online courses while overseas, and Jasper and Clayton’s teachers were sending projects and assignments to help them keep up, Pam explained.
“We had time to do touristy things too,” said Pam.
“We did lots of touristy things in Naples. We were able to visit Rome and Pisa … When I asked the kids what they wanted to do most in Italy they all said Pisa, and it turns out that was their favorite. It was nice to be able to tack that on.”
Less than a month after their return, the Minto community joined the More family at the second annual Darren’s Day. The Family Day event is named in honour of Pam’s husband, Darren, who was killed in a tragic 2018 automobile accident involving a drug-impaired driver.
In 2016 Pam and Darren founded Journey for Jasper, a community run held each September, which has raised over $140,000 for research into MPS.
At the Darren’s Day event, which raises funds for Guelph Wellington Crime Stoppers and local minor sports, Pam thanked organizers and the community for their ongoing support.
“This community really has been our family for so long, and more for the last year and a half for sure – and being able to celebrate Darren’s Day with so many of you, it just seems that Family Day means so much for our family,” she told the crowd.
Despite the tragic reason for the gathering, Pam said, “I’m hopeful that we can turn it into a positive and learn something from the accident and, at least going forward, try and stop impaired driving.”