Joey's story

11-year-old Joey is currently self-isolating at his home in St Helens alongside his older brother, Ethan, Mum, Karen and Dad, Nick.

On the 16 November 2018, 10-year-old Joey was at school when he noticed a "strange taste in his mouth". When he went to have a drink of water, Joey discovered he had lost the ability to talk and use his right arm. It was immediately apparent to teachers that something was very wrong.

In fact, Joey had a life-threatening brain haemorrhage caused by a ruptured Arteriovenous Malformation (AVM). AVM is a tangle of blood vessels in the brain which bypasses normal brain tissue and directly diverts blood from the arteries to the veins. It’s thought to occur in less than one percent of the population.

When his mum, Karen, went to find him after being notified by school staff, Joey had also lost the use of his right leg. He had only been in school for 15 minutes. Karen says: “I was in utter shock and couldn’t believe what was happening. When I dropped Joey off at school he was his usual self. It was just a normal day which had quickly turned into my worst nightmare”.

Joey was rushed straight to Whiston Hospital by Karen and his father, Nick, who drove to school as soon as he heard what had happened. On the way, Joey suffered a seizure and lost consciousness. Karen, who is medically trained as a midwife, carried out CPR until they arrived at the hospital.

Karen adds: “When they told me Joey might not make it, it was like I was experiencing an out of body experience. I remember movement going on around me but I wasn’t taking anything in.”

Joey miraculously survived lifesaving surgery and remained in an induced coma for three days. When he woke, he had lost function in his right side and couldn’t walk or talk. He remained in Alder Hey Hospital for four months.

In August 2019, Joey, known to friends and family as ‘Joey the legend’ arrived at The Children’s Trust for a two-month course of intensive rehabilitation. This involved speech and language therapy, occupational therapy, hydrotherapy and physiotherapy. Joey was keen to work on strengthening his right hand, as before his AVM, he was a budding artist and dreamed of becoming an author.

Joey made brilliant progress at The Children’s Trust. His stamina improved and he can now walk unaided. He can also lift his arm and draw with his left hand. Now, Joey is self-isolating with his family at home in St Helens.

Karen says: “I’m still working as a midwife and even doing extra shifts to cover staff shortages due to current circumstances. My heart is with my job of course but I’m terrified of bringing anything home as the rest of the family are self-isolating. We have all got PPE at work so we are as protected as we can be.”

She adds: “Whilst we’ve been in isolation, Nick and I are now responsible for all Joey’s therapy needs. It’s scary as we aren’t qualified, and we’re worried that we will miss something important. We have been able to do a physio session every day but my main anxiety is if this goes on for too long we won’t have done enough to keep him on track.”

“Every day is different depending on his tiredness or even on our stress levels, but we try to stick to at least two school lessons, one active session, some down time like drawing and some social time such as chatting with friends online on ps4!”

Following Joey’s AVM, Karen has been diagnosed with post-traumatic stress disorder (PTSD).

“Some days are better than others but I’m staying positive. We’ve already been through so much the past 15 months; we know we are strong and can get through anything. The worst part is the unknown. If someone could say that this will blow over in so many weeks or months then it makes it a bit easier to cope. The not knowing is often the thing that festers. I am more than ready for it to all be over but I’m under no illusions that it will be a long journey. However, it’s just another chapter in this book of life! We just need to take it one day at a time.”

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