Brampton family seeks community support to help get gene therapy for 2-year-old child with rare condition

Posted November 13, 2026 2:50 pm.

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 with the medications,” said his mother, Ramandeep Kaur.

AADC Deficiency affects the brain’s ability to produce an enzyme needed to make neurotransmitters and symptoms can include difficulty with motor control, communication, and behavior.

The treatment he needs is in Boston, Mass., and for that, his family is now turning to the community for help and financial support.

“Zoravar goes through odysseys, his eyes roll up all the way to the sky, and it stays almost 10 to 15 minutes. Sometimes it stays longer, like about an hour or half an hour,” explained Kaur. “He used to cry the whole day and whole night. It was so hard for us to handle him when we [would] give him the medication, to move his body.”

Now, a breakthrough gene therapy for AADC Deficiency is their only hope. In November 2024, the U.S. Food and Drug Administration approved the gene therapy Kebilidi for the treatment of the rare disorder.

Zoravar’s family has been seeking government funding for treatment outside Canada. However, their applications for out-of-country treatment funding have been denied multiple times.

In a statement, Ontario’s Minister of Health says Health Canada is responsible for determining whether a drug or therapy is authorized for use in Canada, including assessing its safety, efficacy, and quality.

Kebilidi has not been submitted to Health Canada for market approval in Canada. It adds the policy on out-of-country treatment only funds treatments that would otherwise be funded in the province but are subjected to some kind of delay.

Kebilidi has not been approved by Health Canada or reviewed through the established process and would not have qualified for funding.

“One time treatment only for the eight hours a day, and they will insert the medications with the machines into his brain, the cells that are not working, and they put the virus in the brain, and they will start working after that,” said Kaur.

The family has set up a GoFundMe page appealing to the community for help in raising $5.5 million to cover the cost of the drug required for gene therapy. They have already raised over $1.6 million.

It’s just the latest step the family has taken in a series of efforts made over the past two years, all with the hope of providing a better life for Zoravar.

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