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When Kassondra and Will Lambert’s son Ethan was about two he was diagnosed with an extremely rare genetic disorder referred to as KAND. The couple had noticed early in their son’s life that he wasn’t progressing physically as expected. Ethan was unable to hold a bottle himself and wasn’t starting to verbalize took them more than two years to finally get a diagnosis of this disease so rare only about 300 people worldwide are affected.
Uncovering Ethan’s condition set the couple on a nearly impossible journey through the maze of hospitals and labs and testing and health insurance reimbursement that often bankrupts well-meaning families, not to mention the emotional roller coaster of trying to raise a toddler with multiple physical challenges. Kassondra’s story is one of frustration and compassion that includes a $6000 wheelchair and jumping through the same hoops time and time again with big insurance companies and caregivers. This was true, she says, even though she had navigated social services in her job as a foster care advocate.
In our conversation, Kassondra talks about how difficult it was to get Ethan diagnosed and why the diagnosis is such an important piece of information in the world of health insurance reimbursement.
Kassondra also talks about how she turned to social media to find emotional support and community as a parent of a child with such a rare and often fatal progressive neurodegenerative disorder. She found others on Facebook, Instagram, and YouTube, and connecting with other parents helped her and Will find the emotional ground to keep going.
LINKS:
KASSONDRA on
Facebook: https://www.facebook.com/kassondra.lambert
Instagram: https://www.instagram.com/kassondra_lambert/
What is KAND: https://www.kif1a.org/blog/what-is-kand/
Ethan’s campaign on Help Hope Live: https://helphopelive.org/campaign/19147/