I always think 'Did I hug him enough? Did I tell him I loved him enough?'
Leon Montanari's wish as he laid in his hospital bed was to help others. But a tragic discovery from him mum led to something very special
Leon Montanari died in October 2009
(Image: Julie Montanari )
While teenager Leon Montanari was in his hospital bed he made a list. His time in a ward allowed him time to brainstorm ideas on what he could do to help others in the form of the little old televisions in hospital, which he wanted to fix to allow other patients to be more entertained.
He and his mum Julie Montanari, at his bedside, discussed raising money to fund remote controls, aerials and scart leads, and maybe even purchase a games console if there was enough money left over.
But Leon, of Clydach, in Swansea, tragically did not live long enough to see the plan come to fruition. Only five days later after putting pen to paper, he sadly passed away on October 30, 2009 at the Children's Hospital of Wales's Heulwen ward in Cardiff. He was just 13.
Leon 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, when 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.
Leon shares a first cuddle with his mum after his heart transplant, age 10 months
(Image: Julie Montanari )
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'.
Grieving the loss of her son, Julie discovered the list he had written in his bag when collecting his belongings. The discovery was something that was to kick-start an amazing charity fund which has helped thousands of people across Wales, creating a lasting legacy all in Leon's name.
Ms Montanari said: "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.
Opening up on how things are for her and Leon's family 16 years on after losing him, 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 achieved its mission whilst also branching off and achieving incredible things for the wider community. Today, what started off as a small hope to fix TVs has now led to £300,000 being raised.
The grand opening of Leon's garden, pictured is Cwmtawe staff, Duncan Jones, Justin Tipuric and Dan Baker
(Image: Julie Montanari )
Here is some of the latest successful projects funded by the charity.
Edenstone Homes paid for the an additional needs outdoor area and safe space at Cwm Tawe Community School on behalf of the charity, complete with a football pitch, sensory path, seating area, decking and floor painting.
A forest learning and wellbeing area has been created at the back of the school, complete with benches and planters for children to learn how to grow vegetables.
Benches have been installed at Singleton Hospital for the benefit of families in neonatal wards.
A sensory area with a climbing frame and bucket swing has been installed at Ysgol Bro Tawe.
A bench has been installed at Queen Elizabeth High School in Carmarthen.
There has been the installation of £30,000 worth of defibrillators every 500 metres in Swansea Valley communities, maintained by the charity.
The charity has won the Heart Arrhythmia Alliance award for Wales, acknowledging its efforts buying watches for outpatient children to carry out ECGs at home, supplied to Cardiff hospital.
The charity has sponsored the kits of community rugby, karate and judo teams and clubs.
£1,000 a month is sent to families of children in hospital towards accommodation, food, travel and medical related expenses.
Hari Keift is fundraising for a new kitchen with disabled access worktops in a school department.
The charity sponsors the kits of many sporting groups and clubs
(Image: Julie Montanari )
Ms Montanari, a teaching assistant Cwm Tawe Community School, said: "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."
The charity has received the Arrhythmia Alliance Award Wales. Pictured here with professor Ozun Heart, a cardiologist at University Hospital of Wales
(Image: Julie Montanari )
Recalling her son's bravery during his life, Ms Montanari told one story which stood out to her in particular.
She said: "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."
Leon Montanari dressed as a pirate together with his brother Ross
(Image: Julie Montanari )
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."
Leon pictured taking part in the British Heart Foundation bike ride
(Image: Julie Montanari )
"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."
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