Moyamoya: Robert’s Story

Interviewed by BenHarden

Unlikely to see his twenty fourth birthday, forced to resign from his dream job and step away from the sport he loved.

This was the reality Robert Flynn faced when he unexpectedly suffered a heart attack whilst on the job in 2013.

After being rushed to the local hospital and being told that he had suffered a heart attack, Robert’s Mum refused to let the hospital discharge him until further CT scans were completed.

Little did Robert and his Mum know, the scans would reveal a life-changing diagnoses.

Do you remember the day you were diagnosed with Moyamoya disease?
“After being rushed to the local hospital and being told that I had suffered a heart, they had done a full head CT scan and once the CT scan was done the hospital had picked something up,” Robert says.

“They couldn’t inform us what it was as, but it was to do with my brain, so they booked me in to see my neurologist and he did further scans and that was when he had told us that I did indeed had the moyamoya disease.

“Being so young and not having heard of this before, I asked to hear a second opinion from a neurological surgeon at Macquarie university hospital and clinic in March of 2014 and he did further scans and he did confirm that I had Moyamoya disease.

“At the time he did tell me and my family that without the surgery, I was highly unlikely to see my 24th birthday.

“So just before my 24th birthday, I was rushed in as a high-risk patient for the one of two cordite artery bypass operations and then I had my second operation just two weeks later on the 4th June 2014.

“Up until the second operation I had never had a stroke, but during the 2nd operation I had suffered a stroke.

With this happening, Robert was left with no choice but to resign from his job as a sign writer, a profession he was passionate about and loved doing.

How has Moyamoya affected you and your family?
“Moyamoya took a massive toll on me and my family, as we were living each day as it came, because we were told that the surgery was a risk but needed to be done,” Robert says.

“I gave up everything I loved, my job, playing sport and even being out with my friends.

“Living with moyamoya is hard and I still have my good days and bad days, but I chose not to give up and right now I am back doing what I love doing I got my dream job as a sign writer.

“I’m back playing soccer and I am able to be out with my friends and just living a normal life again a life that any 29-year-old male should be able to live,” he says.

Robert is now 29 years old and is a proud aboriginal man who was raised in Mt. Druittin the Western suburbs of Sydney, New South Wales.

Are you optimistic for the future, living with Moyamoya?
“Is more surgery for moyamoya required, yes there is a good possibility of that, but for now, I just go on and take each day as it comes.

“Life is hard living with Moyamoya, but I’m not going to let it knock me down.

“I am now almost six years post operation and I am still fighting strong.

“Nothing is going to break me down and that includes having to live with moyamoya.

Robert described himself as a ticking time bomb at one point in time, he was uncertain about bis future and was told he would likely be on the disability support pension for the rest of his life.

“Living with Moyamoya has affected me and my way of life,” Robert says.

“It was something that I was not going to let me down and yes there were times that I didn’t won’t to go on with my life, because it was hard, but I chose not to give up and to fight for my life.

“Here I am six years post operation and I will be 30 years old in June and I have a better life and back doing the job I love,” he says.

Why is it important to have more stories of your own out there for the public to understand more about the Moyamoya disease?
“I believe that it is important for other people out there with Moyamoya to share their stories,” Robert says.

“The more stories out there, then the more awareness is put out there about living with Moyamoya and one day who knows, we might be lucky enough to have more awareness raised.”