Retired Supreme Court justice launches foundation for New Brunswick families with sick children

MONCTON — A retired Supreme Court of Canada justice has launched a foundation to help New Brunswick families with sick children.

Michel Bastarache of Moncton said the mission was fuelled by a promise to his late wife and his own personal experience.

"I was fortunate enough to have sufficient funds to create a foundation, and I didn't want that money to be spent on something that is not necessary," Bastarache said.

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"I didn't feel that I needed anything. I could live with my own pension, and I could really give everything away, which I am doing."

Before his wife Yolande's death in 2019, the couple decided they would help families coping with similar circumstances with their children. Now he's set up the Michel and Yolande Bastarache Foundation.

Bastarache's two children, Jean-François and Émilie, died. Jean-François died when he was four years old, and Émilie when she was 17. Both had a rare neurological disease that manifests itself through seizures.

The drugs used to control the seizures stopped their brains from being able to develop, their father said, leaving them bedridden and fed through a tube.

The cost of the drugs was mainly covered by Bastarache's insurance, but he said he thought about people in that situation without insurance, and how expensive things could get so quickly.

When his wife had cancer, Bastarache said, she was taking drugs that cost a total of $5,000 a month, and even at 80 per cent coverage, that would be a big cost for some.

There are other challenges that come with having a sick child. For example, the Bastaraches lived in Moncton, where there is no children's hospital, so they had to travel to Halifax.

"You have to drive or fly to Halifax, you have to stay in a hotel there, and the children can be kept there for a long time if they're very sick."

The Michel and Yolande Foundation wants to help New Brunswick families with some of the financial challenges. This might include helping a family purchase higher-quality medical equipment or helping to cover travel expenses.

Bastarache said parents with sick children often don't get any time off. He said his own children had hundreds of seizures every day, so it was difficult to hire nurses to care for them who weren't worried something would happen on their watch.

Bastarache also said he doesn't want the financial assistance to look like a government program. People shouldn't have to prove that they are extremely poor to get support, he said.

"I want to make it possible for those families to give their children the best, the most comfortable life that is possible under their circumstances."

Bastarache retired from the Supreme Court in 2008 after 11 years. Earlier in his career, he also worked in business, in private practice and as a law professor, and he served on the New Brunswick Court of Appeal.

He said that after leaving his profession, he started thinking about what he would do with his assets. His siblings were about his age, so he thought it wouldn't make sense to give them a lot of money.

"And I hope we can, over time, get other people to contribute to the foundation, so that it'll last longer and provide larger sums of money," he said.

With files from CBC News