A “cheeky and loving” son with a rare heart condition ate KFC with his mum and texted his friends to tell them he loved them on the night before he died. Leon Montanari was born with hypoplastic left heart syndrome, which affects normal blood flow through the left side of the heart.
He was initially given just three days to live by doctors, but battled through to 10 months when he was given a heart transplant, WalesOnline reports. After that Leon, who also had epilepsy, lived a relatively healthy life until he reached the age of 10.
But his body began to reject his new heart as he got older. Mum Julie Montanari spent the best part of two years by his side at Great Ormond Street Hospital.
Julie said he “must have felt horrendous” towards the end but never let on how much he was suffering. At the age of 13 his last evening at the hospital in 2009, Leon texted his friends: “Goodnight, I love you.”
Leon asked his mother for KFC that night, so she went to a local restaurant and gave the server her phone for Leon to order.
It was when the server charged Julie £16.99 for a family bucket all for Leon that she realised her cheeky son had swindled her. When she arrived back at the hospital he was sat in bed laughing.
They ate the food in the playroom together that night and by the following morning Leon had passed away. “That was it, it’s crazy,” Julie joked.
“It was the last supper really. He ripped me off one last time and he always had the last laugh.”
KFC was Leon’s favourite treat but, as he had to eat a healthy diet, it was a rare one. Julie said she knew she “wasn’t going to have him forever” so wanted to make sure he had a happy life doing the things he enjoyed.
He played football and would play on the trampoline even after heart operations. Described by his mother as a cheeky, kind and caring boy who loved to make people smile, he used to save his pocket money up and donate it to charity.
He always feeling sorry for the unwell babies he would see on the ward at Great Ormond Street, Julie said. And he never let on to others how ill he felt and always wanted to stay active.
A devoted mother of two sons from Sunnybank in Clydach, Julie sacrificed everything to make sure her children had what they needed, but still felt desperate as Leon got more and more sick. One day, she leant to give her son a kiss in his hospital bed and collapsed on top of him out of sheer exhaustion.
Unable to work as a self-employed hairdresser, single mother Julie slept on the floor of her son Leon’s ward. She ate leftover hospital food that he did not want as it was all she could afford.
When Julie lost her little boy, she vowed to make sure other families would not face what she had gone through alone and devoted her time to fundraising for a foundation set up in her son’s name. The Leon Heart Fund was originally started to send Leon to America to visit doctors there but sadly he did not live to make the trip.
Thirteen years after his death, The Leon Heart Fund is still helping young people and their families. Most recently a sensory garden has been built in his memory at Cwmtawe Community School – the school Leon attended.
Julie, who now works in the additional learning needs department at Cwmtawe, said her son always loved the school which made adjustments to ensure he enjoyed his time there. On the time that has passed since his death she said: “It’s gone very fast.
“But the 13 years he was alive didn’t. I’ve got thousands of memories.”
Through money raised by Leon’s charity, two rooms at University Hospital of Wales were opened in his name, Leon’s Quiet Room and the Leon Montanari Training and Resources Room. The charity is also part of network which has helped make the Swansea valley “heart safe”. Thanks to this life-saving work there are now £30,000 worth of defibrillators in the area, with one every 500 metres in the Swansea valley covering every village.