“Everything we do is designed to equip, orient and quietly protect parents from things that can make a very difficult thing more difficult.”
In the final episode of Rare Diseases, Real Stories, two Massachusetts mothers who lost their children to rare diseases share how they turned their grief into purpose.
Blyth Taylor Lord started Courageous Parents Network 13 years after her daughter, Cameron, died from Tay-Sachs disease. Jennifer Siedman lost her son, Ben, to Sanfilippo syndrome just shy of his 18th birthday. Together, Lord and Siedman launched the network to empower and support parents whose children are diagnosed with rare diseases and other serious illnesses.
Blyth Taylor Lord holds her daughter, Cameron Lord. Photo provided by Blyth Taylor Lord
Ben Siedman Photo provided by Jennifer Siedman
Ben looks at his mother, Jennifer Siedman. Photo provided by Jennifer Siedman
Cameron Photo: Bryan Goodchild
Jennifer Siedman walks outside with her son, Ben. Photo provided by Jennifer Siedman
Blyth Taylor Lord and Jennifer Siedman of Courageous Parents Network sit for their podcast interview. Photo: Bryan Goodchild
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