Brampton family seeks community support to help get gene therapy for 2-year-old child with rare condition
A Brampton family is racing to raise millions of dollars for an American medical treatment that could help save their two-year-old child living with a rare genetic disorder after the province denied their out-of-country funding. Zoravar Singh has been diagnosed with a rare condition called AADC Deficiency. “His day starts with the medication and ends […]
A Brampton family is in desperate need of financial assistance to obtain an experimental gene therapy for their two-year-old child, Zoravar Singh, who suffers from a rare genetic disorder called AADC Deficiency. The province has denied their request for out-of-country funding. AADC Deficiency impacts the brain's production of a crucial enzyme responsible for synthesizing neurotransmitters, leading to motor control, communication, and behavioral issues.
Zoravar requires specialized treatment in Boston, Massachusetts, which has recently become available through a groundbreaking gene therapy called Kebilidi. The FDA approved this therapy in November 2024. Despite multiple denials from Health Canada, the family continues their fundraising efforts through a GoFundMe campaign, aiming to gather $5.5 million for the treatment.
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