Moyamoya: Connor’s Story

Interviewed by Ben Harden

When Shannon and Joe’s eldest child, Connor, was 9 years old, their family’s life completely changed when he was diagnosed with Moyamoya disease.

Connor, who also has Down Syndrome, was misdiagnosed by three doctors, after suffering a stroke in 2014.

Shannon remembers the day all too well, when her family learnt of Connor’s life-changing diagnoses.

Do you remember the day Connor was diagnosed with moyamoya disease?
“After being misdiagnosed by three doctors it was determined that Connor had had a stroke and that was when we first heard the possibility of Moyamoya,” Shannon says.

“We were kept in Port Macquarie base hospital all day,then transported to John Hunter Hospital (JHH) to do further tests.

“We stayed a week in JHH and then we went on to Sydney Children’s Hospital at Randwick.

“All of the test results showed that Connor did have Moyamoya. So basically, he has some blocked arteries at the base of his brain and in October and November of 2014, Connor underwent both direct and indirect brain surgeries,” Shannon said.

The Frazer family live in Wauchope, NSW near Port Macquarie, and Connor, who is now 15 years old now, lives with his sister Hayley (13) and younger brother Jeremy (10).

Shannon says her family has been majorly disrupted after Connor’s unexpected diagnoses.

How has the Moyamoya disease affected your family?
“Connor’s health gets priority over everyone,” Shannon says.

“He can’t handle the heat or humidity very well at all.

“Our youngest son started school in 2015 and that was my year to get back into the workforce.

“I can’t commit to anything anymore, and in the last 2 years I have been only working on a very casual basis,” Shannon said.

Ever Since Connor’s diagnoses, holidaying for the Frazer family has been challenging in accommodating their son’s health and wellbeing to the climate and destination.

“We usually try to have a holiday in the cooler Winter months, but this year we have been fortunate to holiday in New Zealand in summertime,” Shannon says.

“Connor tires very easily and needs a huge amount of sleep.

“We aim for 11.5 hours of a night during school terms, but it’s harder in holidays when routines are disrupted.

“So, we try to do things very early in the mornings in Summer.

“Water and hydration are extremely important to people with moyamoya, so we always carry his water at all times,” Shannon says.

“Connor’s TIA’s (Transient ischemic attacks) have reduced over time since his operations.

“His hands used to be affected, and then it went to his legs and he would just collapse when he was tired or dehydrated, which gets very stressful for all of us,” Shannon said.

Why is it important to have more stories out there of families like your own, for the public to understand more about the Moyamoya disease?
“It’s very important to get our stories out there, as I’ve since had a Doctor say to me (who misdiagnosed Connor originally) we must listen to more mothers like you,” Shannon says.

“My son is non-verbal, and I kept on saying he wasn’t right, and they just ignored me, even after I repeatedly mentioned that he might of had a stroke (his hands were twitching, that’s was the only thing we had to go off).

“More awareness needs to be out there that kids can have strokes.

“Even kids with Down Syndrome,” Shannon says.