When Kshitij was five, his parents wondered why he kept falling when he walked. Kshitij’s father Anup said the answer was “heartbreaking.”
Kshitij was diagnosed with Duchenne muscular dystrophy, a genetic disorder which causes muscles to become progressively weaker. It can lead to an inability to walk, to feed yourself, or, eventually, to breathe. There is no cure.
Wanting to do whatever they could to help their son, the family moved to London, Ont. from New Delhi, India, so Kshitij could participate in a clinical drug trial led by Dr. Craig Campbell.
Campbell, head of paediatrics at both Western’s Schulich School of Medicine & Dentistry and Children’s Hospital at London Health Sciences Centre, is dedicated to improving the diagnosis and treatment of rare childhood diseases like Duchenne and, ultimately, finding cures. Campbell’s clinical trials take place at Children’s Hospital in partnership with the Children’s Health Research Institute, a program of Lawson Health Research Institute.
He’s inspired by patients who are “tackling life regardless of being in a wheelchair or needing your parents to feed you every day.” To see these kids “building computers, writing comic books, making music” is motivating, he said.
Now, a $1.5 million investment from Children’s Health Foundation, matched by Western, will create a $3-million endowment to bolster paediatric research by Campbell and other scientists. In honour of the foundation’s investment, the head of paediatrics at Schulich Medicine will also hold the title of Children’s Health Foundation Chair in Paediatrics Research.
Campbell, the inaugural chair, anticipates that because of the new funding, more experimental therapies will move to clinical trials, expanding the number of families who can benefit locally, across Canada and around the world.
“Families with rare diseases feel isolated; they feel alone. It’s a struggle. The opportunity to be involved in a clinical trial is an incredibly hopeful thing – not only for their child but because they are contributing to the disease community.” – Dr. Craig Campbell, Children’s Health Foundation Chair in Paediatrics Research
Dr. John Yoo, dean of Schulich Medicine & Dentistry, said he deeply appreciates Children’s Health Foundation’s commitment to research.
“Every therapy, every medical innovation, every cure starts with research. Schulich Medicine is home to incredibly talented scientists on a quest to improve children’s lives. The foundation’s gift recognizes the exciting potential of their research and our partnership with Children’s Hospital.”
Children’s Health Foundation’s investment will also attract talented, young researchers to Schulich Medicine’s paediatrics department, which in addition to rare diseases, has research strengths in neuroscience, epilepsy, pain, inflammatory bowel disease and genetics.
“Research is the future of child health,” said Scott Fortnum, President and CEO, Children’s Health Foundation. “We see a brighter future – one where children have improved health outcomes and quality of life because of enhanced diagnoses, treatments and delivery of health care. We are thrilled to help give our kids the chance at better childhoods and promising futures.”
Now 18 and using a wheelchair, Kshitij continues to participate in clinical trials and shares his story as a Children’s Hero Ambassador to help others living with Duchenne.
He has finished high school and will attend Western in the fall to study emerging technologies such as artificial intelligence. His passion for tech is evident in his bedroom where shelves are filled with gaming devices and a home-built computer sits on his desk.
“The kind of support I get from my parents and older sister, hospital, school – from everywhere – really helps me not to feel limited,” said Kshitij.
Families such as Kshitij’s uplift the inaugural Children’s Health Foundation Chair in Paediatrics Research.
“These are tough diseases to live with, yet families are so strong,” said Campbell. “How can I not get up every day wanting to be a part of that journey with them?”
