BC mother shares update on daughter's battle with rare degenerative disease

A miracle for Makeda

A Vancouver mother has shared a video of her daughter’s journey fighting a rare disease.

Barbara Insley’s daughter Makeda was diagnosed in 2019 with aspartylglucosaminuria (AGU), a rare, fatal, neurodegenerative disease. In the pursuit of getting Makeda on a gene therapy clinical trial in the U.S., Insley has raised $271,195 through the Rare Trait Hope Society, just over half of her goal.

To celebrate the milestone, Insley released an emotional video detailing Makeda’s journey from her adoption to how she is coping with the disease today.

“I want to share it with everyone who has helped us to spread the word so far, and extend my deepest gratitude for your help,” Insley said via email. “We are just slightly more than halfway over our goal of $500,000, but our impact will last for much longer than a clinical trial.”

“This charity that I've set up is not just for Makada, it is for AGU kids that haven't yet been diagnosed or have been diagnosed that we don't know about yet.”

A Miracle for Makeda from Eva Brownstein on Vimeo.

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