When her son was sick with a rare heart condition, Julie Montanari spent the best part of two years by his side at Great Ormond Street Hospital. Unable to work as a self-employed hairdresser, single mother Julie slept on the floor of her son Leon's ward and ate leftover hospital food that he did not want as it was all she could afford.
A devoted mother of two precious 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.
When Julie lost her little boy at just thirteen years old, 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. You can get more Swansea news and other story updates straight to your inbox by subscribing to our newsletters here.
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Leon Montanari is described by his mother as being 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, Julie said, always feeling sorry for the unwell babies he would see on the ward at Great Ormond Street where he spent a great deal of his time during his final years.
He was born with a rare heart condition called hypoplastic left heart syndrome which affects normal blood flow through the left side of the heart. Despite weighing a healthy 8lb 12oz when he was born, he was given just three days to live but made it to ten months where he was taken to Great Ormond Street Hospital for a life-saving heart transplant.
The youngster also suffered with epilepsy but was a spirited young boy who remained relatively healthy until he was ten years old and his body began to reject the new heart. Despite his suffering, Leon never let on to others how ill he felt and always wanted to stay active, his mother said.
He played football and would play on the trampoline even after heart operations. Julie said Leon taught her how to let go, she wanted to make sure he had a happy life doing the things he enjoyed. "I knew I wasn't going to have him forever," she added. Although he had to follow a healthy diet due to his health issues, he enjoyed the odd fast-food treat and his favourite meal was KFC.
On his last evening at the hospital in 2009, Leon texted his friends: 'Goodnight, I love you'.
"I think he must have felt horrendous but he never told me," Julie said. Leon asked his mother for KFC that night, 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. It was the last supper really. He ripped me off one last time and he always had the last laugh," Julie joked.
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 until his passing. Thanks to the generous sponsorship and hard work of Chris Edge and his team from the Edenstone Foundation, the beautiful garden was built for other students who have additional learning needs to enjoy and remember the vibrant young pupil who came before them.
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. The caring mother said she feels connected to her late son through her work in the department as she gets to talk about her son all the time to teachers and other students who ask about him. On the time that has passed since his death she said: "It's gone very fast. But the thirteen 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.
The charity has raised £250,000 to date and helps individual families take their unwell children on holidays to places like Bluestone. as well as providing financial help to families to cover the hidden costs of travelling back and forth to hospitals and needing accommodation. On her experience caring for Leon, Julie said it was a difficult time for so many reasons:
"You're worried about losing your home and everything with it, let alone losing your child that you're desperately trying to keep alive. You're losing your business because you're not reliable. So everything was going. If there's anything I can do now, I will, because I know what people go through."
Julie's son Ross has just turned 25 and she said she was so proud of him. On how she wanted people to remember his brave brother, Julie said: "Just remember how he inspired everyone, being ill can also mean you have a legacy. He'd want people not to suffer. Leon taught me how precious life is and how important it is to be kind to each other.”
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Parents who lost baby boy after he fought for eight days raise over £1,500 for Swansea hospital ward
