Barb Shantz

My CHEO Story

My son was first referred to OCTC when he was six months old as he was not reaching his developmental milestones. After an appointment with the developmental pediatrician, he was referred for occupational therapy, physiotherapy, speech therapy and also to neurology and genetics.

He attended the OCTC pre-school from age 2.5 years old, and stayed on at the OCTC school through grade one. This was so important for our family, as his numerous therapies were integrated into his school days, and took the burden off of our family of numerous CHEO visits each week.

He has global developmental delays, which results in him using a mobility device (wheelchair or walker), problems with fine motor control and limited speech. He has also been diagnosed with mild intellectual disability.

MRI’s have shown that my son was born with a very small cerebellum, and that it continues to get smaller which means that his condition is degenerative. Our geneticist, Dr. Kym Boycott, believes that his condition is the result of a rare disease – as of yet undiagnosed. We continue to enrol my son in new studies, with the hope that someday we will have an answer as to the underlying cause of his disabilities.

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Why I'm involved

I feel that this work is important, as it’s imperative that the general public understands the important work that CHEO undertakes. The studies that are being undertaken by CHEO researchers have the ability to change lives, provide answers to families and provide a better quality of life for our children.

Areas of Interest

Genetics Rare Disease

My Role

  • Patient and Family Advisory Committee Member 2018-2019
  • Research Project Advisor: Care4Rare study team
  • Research Project Reviewer: “What Do Caregivers Know About Antibiotic Prescribing In The Critical Care Setting: Identifying Communication Opportunities Between Physicians And Caregivers of Critically Ill Children.”
  • Research Project Advisory: RareConnect.org – Genomic Phenotypes Project
  • Research Project Reviewer: Analyzing and improving the management of post-discharge narcotic use in Posterior Spinal Fusion for Adolescent Idiopatic Scoliosis using Quality Improvement methodology
  • Research Project Reviewer: Defining and Operalizing Assent in the PICU: A Stakeholder Survey