Stroke survivor Joe, 11, launches YouTube channel to help children with disabilities

It was 2013 and the Hannon family had just embarked on a new life in Australia

Ed had landed a job at a hospital in Adelaide and wife Louise and two children Joe, six and Millie, three were just starting out on their new adventure.

But then Ed started to worry about his football-loving son who was normally a chatterbox and full of energy.

“Joe hadn’t been himself for a little while and we didn’t quite know what was going on so we took him to A&E,” recalls Ed. “After a day of tests, we were told that Joe had a significant heart problem and it was only functioning at around eight per cent of its capacity.”

Only chance was a heart transplant

They were told that Joe’s only real chance of survival would be a heart transplant, and for that he needed to return to the UK. The family were flown back to the UK, straight to Great Ormond Street Hospital, where Joe was put on the waiting list for a heart transplant given his heart function was so poor and was not going to recover.

“It was a real shock,” says mum Louise. “I think e thought once we had got to Great Ormond Street they’d be able to do something for him but we had to make the difficult decision to agree to a heart transplant.”

While waiting for a donor Joe’s condition worsened meaning he was fitted with a Berlin heart, an air driven pump which takes over the work of a child’s own heart.

“We knew there was a risk of stroke with a Berlin heart, with a risk of both blood clots and bleeds from using the device and being on anticoagulation,” says Ed. “But he was so poorly by then we really didn’t have an option.”

Boxing Day

Then on Boxing Day 2013 nearly four months after Joe had first been admitted to hospital the thing his parents had been dreading became a reality.

“We noticed Joe’s left hand wasn’t moving, and the rest of the left side of his body couldn’t move much either. He was confused and making strange noises, and I realised he was having a stroke in front of me.”

Joe was taken to theatre and needed two neuro surgery operations to remove the blood from his brain. “They didn’t know if he would make it and we were preparing ourselves to say our goodbyes,” says Louise .

But Joe is stubborn and refused to give in.

“We then had to wait to see what sort of damage the stroke had left and how well he would recover – whilst also continuing to wait for a donor heart to become available," says Ed who is doctor.

Again the Hannons were warned not to get their hopes up and were told although Joe might be able to eventually walk again it was unlikely he would be able to run or play football like other little boys his age.

“As parents of two, Louise and I split our time between being at hospital with Joe and with our daughter at home so there was always someone there. It was so hard, but when it happens you’ve just got to get on with it.”

Rehabilitation

Eventually, Joe received his heart transplant in January 2014 and then faced a long journey of rehabilitation. He spent another two months in hospital, before several months undergoing rehabilitation at the Children’s Trust and then with a physiotherapist at home.

“When Joe had his stroke, we had amazing care from the neurosurgery team at Great Ormond Street Hospital, but then once he left hospital we didn’t know where to turn for help with his rehabilitation,” recalls Ed. “We got in touch with the Stroke Association, in particularly Anna at the Childhood Stroke Project. Anna came to see us at home, gave us advice and signposted us to different organisations such as the Children’s Trust. She was fantastic."

Louise was subsequently involved in helping to write new guidelines for childhood stroke as part of the project. With lots of physio and rehab Joe has slowly improved.

"However even his new heart is still not working as it should be and he has a residual left sided weakness. He has battled mental health issues and is trying not to let his disability affect him too much, but life can still be hard. We definitely found that awareness of childhood stroke is limited.

"Generally we have found most people don’t think kids can have strokes – probably because it is rare. Joe feels a lot of people don’t understand what a stroke is and what problems it leaves kids with. As parents, we also feel the hidden effects of stroke are poorly understood and sometimes difficult to explain. An example includes behavioural problems and having to explain this to others, as well as fatigue and why Joe gets so tired easily.

“Mental health issues such as anxiety are also common and poorly supported. We had to fight hard as parents for support when Joe was suffering from depression.”

YouTube channel launch

Joe, who lives in Adel with his mum and dad and little sisters Millie, now nine and two-year-old Orla, is now back full-time at Ralph Thorsby School in North Leeds and he plays football for Leeds United Foundation.

Recently he set up a YouTube channel, ABLE, to focus his mind on the positive and hopefully inspire others. His videos tell his story and shows him enjoying his hobbies; playing football and mixed martial arts (MMA) and showing off his rapping skills.

Joe said: “I got really into YouTube and was always watching it. I watched a lot of YouTubers and people that did football and MMA videos and they cheered me up when I was fed up. The one thing I could never find was inspiration when I needed it, so I wanted to give that inspiration to other kids going through tough times like me. I fill my channel with the things I love and hope that other kids in similar situations can come to me to find inspiration.”

A child a day has a stroke

Around 400 children and babies will have a stroke every year in the UK – more than one a day. Throughout May people are being asked by the Stroke Association to wear purple and raise money for stroke victims and research.

May is Stroke Awareness Month

For more information about childhood stroke and the support available from the Stroke Association, visit www.stroke.org.uk/about/childhood-strokeTo check out Joe’s YouTube channel ABLE visit https://www.youtube.com/channel/UCOvdcKAKsiRE_-T2DI9J8kQ and watch his inspiration video on https://youtu.be/-yYcWgRGCgw