Brampton family hopes to raise $5.5M for tot’s gene therapy treatment in U.S.
Two-year-old Zorawar has a rare genetic disorder called aromatic L-amino acid decarboxylase deficiency and the treatment is not approved in Canada
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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