The actor was diagnosed with esophageal cancer last year.
Doug , his wife Kasey, daughter Lauren and son Will , Nick , his wife Lauren, and daughter Delta , Kiran , his wife Anju, his daughters Aadya Warrier and Krishna pose for a portrait in Irving, Texas. — Photos: SHAFKAT ANOWAR/The Dallas Morning News/TNS
In 2018, they founded a Leigh syndrome organisation and raised over US$1mil for a gene therapy that might be able to transfer healthy genes into their son’s defective cells, potentially saving his life. But the project ultimately fell through. Will’s syndrome is caused by a genetic defect that prevents cell structures called mitochondria from converting food to energy. Leigh syndrome affects about one in every 40,000 newborns.
Kasey and Doug created the Cure Mito Foundation to ensure no other parent felt alone. The group tracks the health of over 250 kids with Leigh syndrome around the world. If researchers want to test a Leigh syndrome treatment, Cure Mito can connect them with patients. Anju Govind and Kiran Ramachandran, who also live in Irving, joined the Cure Mito community in 2018 after their daughter Aadya Warrier, now seven, was diagnosed with Leigh syndrome.
In 2020, UT Southwestern partnered with Dallas-based Taysha Gene Therapies to advance several gene therapies, including the one for Leigh syndrome. When stock prices for biotech companies plummeted the following year, Taysha put the Leigh syndrome project on hold. Lauren has been on antidepressants since soon after Delta’s diagnosis. “There’s always an undercurrent of anxiety,” she said. “It could be tomorrow. It could be tonight.”
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