TORONTO Toronto chef Matt Kantor and his wife Alana Kayfetz are getting a rapid medical education after their youngest son, Henry, was recently diagnosed with an extremely rare condition. Henry has a genetic syndrome called Myhre Syndrome. It affects between 200 and 250 people in the world, Kantor told CTV News Toronto. Dr. Gregory Costain, a metabolic genetics specialist at Toronto’s Hospital for Sick Children, said it was first discovered in the 1980’s and a test for the condition was only developed in 2012.
Myhre Syndrome is a degenerative condition that affects the connective tissue in the body. “Over time, things become stiff and they tighten and so major organs from our heart and the vessels that come out of it, to our airways, to our joints, and our skin are compromised and there can be these life-threatening complications,” Costain said.
STACEY Green and her husband Nigel have been teaching their daughter Imogen at home after schools were forced to close for Lockdown 3. The nine-year-old is in Year 5 at Westlea Primary School and is taking part in her classes virtually and completing tasks with her parents. Imogen is also having to shield until February 21 as she has a rare genetic condition called Myhre Syndrome, which causes heart and aorta problems. It can also cause bone and joint abnormalities. She had to have spinal surgery in April 2019, which saw a rod put into her back, and she now has to wear a scoliosis suit.