'if only i could have him back for one more hug'

LEON MONTANARI MADE A LIST WITH HIS MUM BY HIS BEDSIDE - AND IT'S GONE ON TO HELP THOUSANDS 10:27, 31 May 2025 Lying in his hospital bed, teenager Leon Montanari made a list. His time

in the ward gave him the opportunity to brainstorm ideas on how he could help others, particularly by fixing the small old televisions in the hospital to provide more entertainment for other

patients. He and his mum Julie Montanari, who was at his bedside, discussed raising funds to purchase remote controls, aerials and scart leads, and possibly even a games console if there

was enough money. However, Leon, from Clydach in Swansea, tragically didn't live long enough to see his plan come to fruition. Five days after putting pen to paper, he sadly passed away

on 30 October 2009 at the Children's Hospital of Wales's Heulwen ward in Cardiff. He was just 13 years old, reports Wales Online. Leon was born with a rare heart condition called

hypoplastic left heart syndrome, which affects the normal blood flow through the left side of the heart. Despite weighing a healthy 8lb 12oz at birth, he was given just three days to live

but managed to survive until ten months, when he was taken to Great Ormond Street Hospital for a life-saving heart transplant. The young lad also suffered from epilepsy, but was a spirited

boy who remained relatively healthy until he was ten years old and his body began to reject the new heart. Article continues below Testament to his courageous personality, Leon never let on

to others how ill he felt despite his suffering and always wanted to stay active. On his last evening at the hospital in 2009, Leon texted his friends: 'Goodnight, I love you'.

After her son's passing, Julie was going through his belongings and found a list in his bag that would inspire the creation of an incredible charity fund. This initiative has since

supported thousands across Wales, establishing a profound legacy in Leon's honour. Ms Montanari reflected on the beginnings of the charity work: "The original thing was to get

money for remote controls, aerials and scart leads, for those old little televisions in the hospital, and we wanted to raise enough to buy a PlayStation or an X-Box, that was Leon's

wish. He didn't want to see any children without a TV, because he was in hospital for so long and there wasn't any televisions which worked." "The same week as Leon died,

[and] we made a little list. I had to come home on the Monday because my father had passed away, and I went back to see Leon on the Thursday, after arranging the funeral and everything,

because Leon was on a transplant list to have his second heart transplant. We'd made the list on the Monday and I forgot all about it. Leon died the on the Friday, and when I unpacked

his bag there was the list." Ms Montanari launched the Leon Heart Fund on October 30, 2009, created as a means of supporting the children and families who attend the cardiac wards at

University Hospital of Wales in Cardiff and the Special Care Baby Unit at Singleton Hospital in Swansea, providing small grants to help parents with hospital expenses for the paediatric

cardiology department at University Hospital of Wales. Reflecting on the years since she lost Leon, she said: "I look at life now and I think you have to live each day. Material things

are nice, but they are not everything. Your health is the most important over anything - money, anything. As long as you are happy and healthy, you have got your family, that's all that

matters. People don't appreciate that. "I keep thinking to myself 'if only I could have him back for one more hug'. You always think 'Did I hug him enough? Did I

tell him I loved him enough?' "I always wonder should I have nagged a bit more, and you wonder did I do enough. I know the doctors were good enough, but you always question

yourself. He did suffer from birth, and we had the choice from when he was born on whether to let him go peacefully, but I thought no, I wanted to give him a chance. I wanted to see if any

operations could help him or give him a longer life. He was with us for 13 years, and I'm glad. I think I always knew I was on borrowed time. I just wish things were different. .

"We lived a normal life and I had a normal pregnancy. I asked the nurse 'why are his lips a bit blue', and his nails. I just had an intuition something wasn't right. The

nurse kept reassuring me, but then the next day when they came to check him out, within half an hour he was on a life support machine. Those blue lips and nails - I think it was a

mother's instinct, you just know something wasn't right. "Leon had so many cardiac arrests through his life but always bounced back. But when he had the last one, I just knew,

I thought, he had had enough." Since launching, the Leon Heart Fund has not only achieved its initial goals but also expanded its impact within the wider community. As of now, an

impressive £300,000 has been fundraised. The charity celebrates several significant successes as a result of its fundraising efforts. In recognition of its contribution, the charity has won

the Heart Arrhythmia Alliance award for Wales, thanks to its initiative providing watches that enable children to conduct ECGs at their homes, which are supplied to a Cardiff hospital.

Supporting local youth engagement, the charity has sponsored kits for various community sports teams including rugby, karate, and judo clubs. Each month, £1,000 is donated to families with

children admitted to hospitals to help cover accommodation, food, travel, and other medical-related costs. Hari Keift is dedicating efforts to raise funds for installing a new kitchen with

disabled access worktops in a school department. Ms Montanari, a teaching assistant at Cwm Tawe Community School, shared: "When Leon was in hospital, there were no charities to help at

the time. I had to do it all by myself, and I was advised to give up work and claim income support, but I stayed self-employed. It wasn't just Leon - I was losing the house, everything.

"That's what drives me now, knowing that other people are going through the same thing, and if I can help them I will. As long as the family needs financial support, we will help.

We don't need to know the ins and outs. All I say is for people to make a genuine application, and I will find the money that week. "I think what keeps me going is making a

difference to people in the name of Leon. There are a lot of charities around, and it is hard to keep the money coming in. Last year we raised £24,000 and spent £19,000. I am keen to get the

money in and I am keen to spend it on things that people need. It is no good sitting in a fund." Reflecting on her son's courage, Ms Montanari recounted one incident that

particularly resonated with her. "He had been in hospital and had a pacemaker put in after having four cardiac arrests in one night, and put a pacing wire through his neck onto a

battery pack outside to get him in an ambulance. "Within a week, he was home and was on a trampoline. "He was going to visit a friend and I told him 'don't go far'.

I decided to take the dog for a walk and see if he was ok and I saw a pair of trainers doing a flip. I thought 'oh my god', but that's the type he was, very resilient, strong,

and a mind of his own. "Speaking to a lot of heart mums, it's the same. The children are funny, witty, and haven't got a care in the world. Those are the sort of kids which

teach you. They are going through so much and never moan. They make light of everything, they don't whinge about going to hospital all of the time, they've got a different

personality and humour." Ms Montanari explained how her son's legacy lives on, something she sees every day whilst working at the school. She said: "I could be sitting in the

classroom and I'll have people say to me 'We've seen you on the internet'. The school does a lot with the charity, it does a fundraiser every year. And I'll have

children ask me (about Leon) 'Is that your son?' 'Are you his mother?' It is so touching that his memory is kept alive by new generations, and it's now 16 years this

year. You've still got little 11-year-olds coming up to the comp saying 'Are you Leon's mother? My mother knew Leon?' It is a sense of pride. Article continues below

"Every year on his birthday we go out for a meal, and on the anniversary of his death, we do a little gathering in the garden and we let off a big firework. My son Ross went to get a

firework this year, and when he lit it there was a massive red heart. It was absolutely beautiful. It was special." For more details on the Leon Heart Fund and to make a donation,

please click here.