Jen Schultz is a parent who is in the front lines of caring for a one-of-a-kind young woman. Her daughter Olivia is the only person in the world to be diagnosed with her rare disease. She has very complex needs and she and Jenn, as her carer, face many challenges.
In this episode of the I Care for Rare podcast hosts Sandra Markus and Sherrilynne Starkie interview Jen Schultz, a parent who is in the front lines of caring for a one-of-a-kind young woman. Her daughter Olivia is the only person in the world to be diagnosed with her rare disease. She has very complex needs and she and Jenn, as her carer, face many challenges.
This podcast, I Care for Rare, is part of a social advocacy campaign that seeks to drive reform in healthcare and community support systems for rare diseases. The campaign strives to unite and empower those affected by rare diseases and to represent their collective voice.
Jen shares her touching story about the joys and challenges of life as Olivia’s primary carer.
“Olivia has a partial mosaic trisomy of chromosome 17 in the ring format. And the ring of her diagnosis makes her one in the world. It makes her unique and at the time of diagnosistreatment was given to us in a broad spectrum,” explains Jen. “It was she may never walk, she may never talk, so we're just going to throw occupational therapy, physiotherapy, and speech therapy at you and see what happens. But you really don't know where you're going with it all. We want Olivia functioning in society. We want her to be happy. We want her to be accepted by people.”
Jen and Olivia’s story highlights the need for a comprehensive national strategy to support people with rare diseases, their families and carers and explores potential solutions for better social supports.
This podcast highlights the essential work of CORD (Canadian Organization for Rare Disorders) and their "Canada's Rare Disease Strategy," a comprehensive plan with five key action points. These points include:
"I Care for Rare" calls on both the Federal and Ontario Governments to amend the Health Protection and Promotion Act, aligning with the recommendations outlined in CORD's Rare Disease strategy.