For boy with rare bone disease, new Children’s Hospital clinic a game-changer

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Making the eight-hour trip to Montreal multiple times a year was challenging but necessary for Jessica Quinlan – who would make the trip with her medically fragile son so he could get specialized medical care only available out of province.

Thanks to a new partnership agreement between Children’s Hospital at London Health Sciences Centre and Shriners Hospitals for Children Canada (SHC Canada), this is no longer necessary.

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The two hospitals announced a new affiliation agreement Friday that will improve care for children with bone diseases in Southwestern Ontario. The collaboration will focus on improving specialized orthopedic care, advancing research and educating the next generation of health-care providers in the field of pediatric bone diseases, the hospitals say.

The “first of its kind” partnership brings specialized care closer to home for families in the region who otherwise must travel long distances to get treatment, LHSC said.

Families like Jessica Quinlan’s, whose 14-year-old son Reiko was referred to the Shriners hospital in Montreal as a newborn after he was diagnosed with osteogenesis imperfecta type III – a rare bone disease characterized by frequent and easily occurring fractures.

Now 14, her son has experienced more than 1,000 bone fractures in his lifetime, each one as painful as it would be for anyone else, his mom said.

“Reiko’s bones were so brittle that they would fracture by doing basically nothing,” Quinlan said. “He would be playing with toys or on a swing set, just like all regular kids, when he would hear a sudden ‘pop’ and be in absolute agony.”

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Since much of Reiko’s care started taking place at Children’s Hospital earlier this year, the family only has to make a 90-minute trip from Goderich to London once or twice a month, which has made his condition significantly easier to manage, his mom said.

“Having this care here just means that there’s more time for our family to be together,” Quinlan said. “Less time being a patient, and more time being a person.”

Reiko is a patient in the new Shriners rare bone disease clinic at Children’s Hospital, which allows patients like Reiko in Southwestern Ontario an opportunity to receive some of their care at LHSC instead of travelling hours to the Shriners hospital in Montreal, LHSC said.

The clinic is a key part of the formal affiliation agreement between the two hospitals.

“This is an exciting opportunity to create something unique and special for the patients we serve and their families, as well as for the staff, physicians, researchers and students vital to delivering this care,” Children’s Hospital vice-president Nash Syed said of the affiliation agreement.

The agreement aims to formalize existing collaborations between the two hospitals to have more impact, he said.

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The Quinlans are feeling that impact. With the clinic, Reiko received a new treatment that has slowly returned his ability to move around without a wheelchair.

“We can’t believe that Reiko has gone from multiple fractures most weeks to only one in the four months since he started his new treatment, and that we’re able to have this treatment administered much closer to home,” Quinlan said, adding Reiko is now almost pain-free.

The affiliation, funded by a $1.5-million grant during five years from Shriners Hospitals for Children Canada, also will focus on advancing research and improving education in the field. A research grant, for example, will be awarded to support innovative projects involving researchers from both hospitals that show potential in improving the treatment of pediatric bone disease, LHSC said.

Beginning in the summer of 2025, the two hospitals will offer a joint fellowship for a doctor to gain experience in trauma care at LHSC and specialty orthopedic care at Shriners hospital, LHSC said.

The Children’s Hospital at LHSC serves a population of 1.5 million, with more than 400,000 children in the Southwestern Ontario region from birth through age 18.

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Shriners Hospitals for Children Canada is a Montreal-based acute-care hospital that specializes in providing care for infants, children and young adults with orthopedic and neuromuscular problems such as scoliosis and brittle bone disease, among others.

A spokesperson for Shriners hospital said the affiliation has “opened the door” for the hospital to pursue similar collaborative projects across Canada.

“This affiliation is a dream come true,” said Jacques Boissonneault, an administrator at Shriners Hospitals for Children Canada.

“It will not only improve the lives of patients and their families, but will also advance research and teaching.”

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