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Little Hearts Matter

Diane Inglis

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Max BarlowHigh Lane PrimaryAquinas CollegeStockport SchoolHypoplastic Heart SyndromeLittle Hearts

By the time he was just five years old, Max Barley, had gone through three heart operations, but four years later, the one thing that strikes you now is his huge smile.

At nine years old, he is an amazing example of triumph over adversity, attending mainstream school, High Lane Primary, where he is surrounded by his friends, and he also enjoys a range of sports at special sessions for children with disabilities, at Aquinas College and Stockport School.

Max

Max, who lives in High Lane, was diagnosed before birth with Hypoplastic Left Heart Syndrome, which meant that only half his heart was working properly.  

His dad, Alastair, who is now his full-time carer, explained: “The problem was detected at my wife Felicity’s 23 week scan, so we were referred immediately to St Mary’s Hospital in Manchester which has specialist facilities.

“It was obviously a worrying time and Max had to have heart surgery within five days of being born. This was the first of three operations, the other two being at five months and then five years.

“We were under the doctors at Alder Hey Children’s Hospital and spent weeks on end staying there while he underwent these surgeries and my parents Richard and Janet were fantastic at helping us with the other children,” he said.

Max’s brothers and sisters, James, now 14, Mollie, 8, and Willow, 2, have grown up knowing that he needs more assistance than most but his parents are still grateful that he is able to live as normal a life as possible.

“Although we have already gone through three major surgeries and Max’s health needs are ongoing, we consider ourselves lucky. For some, the treatment is much worse and the challenges much bigger. Max still faces further surgery in the future but in the meanwhile we are just getting on with it,” said Alastair.

Max has a teaching assistant to help him get around school as he gets breathless when walking and has limited mobility but this means he can attend school with his friends.

He also loves playing the sport of boccia, a wheelchair version of bowls, and curling, which is similar to the game of curling, but playable without the need for a surface of ice.

These sessions are organised for children with physical and learning disabilities and Max enjoys playing both sports on a regular basis.

The family have been supported over the years by a national charity, Little Hearts Matter, which does not have any celebrity endorsement but helps children with a range of congenital heart conditions such as Max’s. As an expression of their gratitude, the Barley family have raised funds through different events.

Alastair completed the Ride London 100 mile bike ride three years ago and the family’s most recent event was an evening of songs, comedy and poetry at Marple Conservative Club.

Organised by Max’s grandfather, Richard, the event was compered by Tim Tangent and featured the Monday Mondays mixed a cappella choir, the Con Chords vocal group and a thanks to the audience by Max himself.

Tickets sold out in advance and the family are hoping to have raised around £2,000 for Little Hearts Matter, which supports children and families all over the UK, including three from the Marple area.

“We are really grateful to everyone for coming to the event but also to everyone at the charity for the fantastic work they do,” Alastair concluded.

www.lhm.org.uk