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Blyth Lord is the Founder of the nonprofit, Courageous Parents Network, an educational platform that orients, empowers and accompanies families caring for children with a serious illness. The mission and goals of Courageous Parents Network originated from Blyth's experience of parenting her daughter diagnosed with Tay-Sachs at 6 months old.

EPISODE HIGHLIGHTS

Can you share your background and tell us about your family?

My husband and I have three daughters. Our second daughter Cameron would be 22 now, but she died in 2001 at the age of two from a rare genetic condition, Tay-Sachs. She was diagnosed at 6 months old. She was diagnosed much earlier than what is typical because her cousin Hayden was diagnosed with Tay-Sachs when he was 18 months old. Because my husband is an identical twin with Hayden's father, I assumed he was also a carrier and that my daughter could also have Tay-Sachs. Upon testing, I was also a confirmed carrier and Cameron was diagnosed. Cameron's diagnosis with this rare, fatal disease continues to be a big part of our family story. My two surviving daughters and Hayden's two sisters understand that their siblings are a core part of our family. 

What part have Cameron and Hayden played in your family moving forward?

I focus on promoting the value of palliative care. There was no hope for treatment or therapy when Cameron and Hayden were diagnosed and the only care plan we had was a palliative care plan. It was devastating that there was nothing we could do to prolong their lives through experimental treatment or trials, but when palliative care is your only plan there's a lot of acceptance, peace and resolution. We had 18 months to come to terms with the prognosis and determine what we wanted for Cameron. From early on, we had to accept what was coming, but it meant that afterwards it was easier to focus on Cameron and Hayden's legacy and the meaning of their short, beautiful lives. 

Can you explain what palliative care is?

Hospice is end of life care, the tail end of palliative care. Palliative care focuses on quality of life for anyone living with a life-threatening condition. From the point of diagnosis on, palliative care is an appropriate addition to a care plan, delivered concurrently with curative treatments that treat, manage and potentially cure the condition. Palliative care is an extra layer of support which helps patients and caregivers make treatment decisions with quality of life in mind.

Did you seek out palliative care for your daughter?

What are the support services offered through Courageous Parents Network?

LINKS AND RESOURCES MENTIONED

Once Upon a Gene Channel with The Disorder Channel

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Once Upon a Gene Merch Shop

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Courageous Parents Network

https://courageousparentsnetwork.org/

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