Toronto Baby Gets Diagnosed With Rare Condition That Only 200 People In The World Have

The parents' GoFundMe says it's a "difficult challenge... neither of us are prepared for."

Toronto Associate Editor

Two parents are raising money for their 10-month-old baby who has been diagnosed with an extremely rare condition called Myhre Syndrome.

Matt and Alana Kantor described their son Henry's diagnosis on their GoFundMe campaign, writing that Myhre Syndrome is a connective tissue disorder that only affects around 200 people worldwide.

"Henry has already endured 2 heart-related surgeries. These surgeries have left him unable to swallow on his own. Heart surgery is common for people with Myhre syndrome," the parents wrote.

According to the National Organization of Rare Disorders, those with Myhre syndrome can also have "distinctive heart and aorta problems, mild to moderate intellectual disability, autism... and various bone and joint abnormalities."

CTV News reports that while ten-month-old "Happy Henry" is alert and active, the Kantors are preparing for the many challenges still to come.

They hope to give Henry "as normal a life as possible for as long as possible." Donations will help them afford the many expenses of his treatment and care.

The GoFundMe raised over $75,400 of its $100,000 goal at the time of publication.

  • Toronto Associate EditorAlex Arsenych (she/her) was a Calgary-based Associate Editor at Narcity Canada, covering everything from what's trending across the country to what's happening near you. On top of her Bachelor of Journalism, Alex graduated with a history degree from the University of Toronto. She's passionate about past and present events and how they shape our world. Alex has been published at Now Magazine, Much, MTV, and MTV Canada.

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