Rare surgery in Montreal allows 9-year-old girl to live normal life

A rare surgery at the Montreal Children's Hospital is allowing a nine-year-old girl to keep her adrenal glands and live a normal life.

A rare surgery at the Montreal Children's Hospital is allowing a nine-year-old girl to keep her adrenal glands and live a normal life.

Mathilda Stacey lives with Von Hippel-Lindau disease, a rare genetic disorder that can cause tumours and cysts to grow in various parts of the body.

"She's just such a cool kid," beams her mother, Stephanie Stacey. "I try my best to explain things in an age-appropriate way... This is a genetic condition, but it doesn't define her."

Stacey, who also lives with Von Hippel-Lindau disease, says she was heartbroken when Mathilda's test results came back positive.

"Nobody wants to go through that for their family or their kids," she said. "Obviously, when you find out that there's an issue with your kids, you want to deal with it as soon as possible, like, you don't want to wait."

Stacey says she found out that she had the genetic condition just before giving birth to Mathilda -- and had to undergo surgery on her adrenal glands around the same time.

"When we talk about her illness, we don't really use terms like that," she tells CTV News. "I just say our family has this condition that sometimes makes us grow these extra bumps and lumps inside of our bodies."