'My son's kiss makes life worth living': The heartbreaking story about a 34-year-old father's race to provide a legacy for his child before he dies of motor neurone disease

Neil Platt was diagnosed with the degenerative condition in 2008 aged 34



Within just months he was unable to move or breathe without the help of a ventilator and he died a year later in February 2009



'I Am Breathing' captures his last few months of life, showing how the disease ravaged his body but it also highlights his indomitable spirit

The film shows how Neil writes a letter for his now six-year-old son

Letter gives manly advice and a memory box contains Neil's favourite leather jacket and hat, his childhood teddy bear and a Zippo lighter



Neil wanted to raise awareness of MND so that a cure can be found

The film ends with Neil's death



A heart-rending film about a young father’s battle with motor neurone disease and the letter he struggled to write to his two-year-old son in his last months is to be released later this month.



'I Am Breathing' documents the last months of former architect Neil Platt’s life. Viewers are given an insight into how the disease ravaged his body but the docufilm also celebrates the 34-year-old's indomitable spirit.



Neil documented his rapid and steady decline to raise awareness of the neurological disease so a cure could be found as soon as possible - and hopefully before his son, who is also at risk of developing the deadly condition, grows up.

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Neil Platt is pictured with his baby son Oscar in September 2007, just five months before his diagnosis of motor neurone disease. Neil died 12 months later

Neil was diagnosed with MND in February 2008. Months before, he had noticed that his foot was slapping against the ground when he walked. He grew increasingly concerned that he was developing the same condition that had killed his father when he was 51, and his grandfather at 64.



Neil underwent a raft of tests and all the results came back clear, but Neil knew that his symptoms were not normal.

Eventually he was referred to a neurologist who, taking his family history into account, broke the shattering news to the new father. It is not possible to test for MND specifically - it is only diagnosed after a process of elimination.

Over the following few months, the illness took over Neil’s body with unrelenting speed.



Neil and Louise married in 2004 aged 29 after a whirlwind romance. They had known each other at university but did not become a couple until a chance meeting at a party after they had both graduated

The speed that the disease took over Neil's body was staggering. Neil is pictured with his then two-year-old son Oscar - just 9 months after his diagnosis and three months before his death

WHAT IS MOTOR NEURONE DISEASE (MND)?

MND is a terminal illness that kills the motor neurones - the nerve cells that send messages to the muscles so the body can move. There are 5,000 people living with motor neurone disease in the UK at any one time, but it’s unusual for it to strike in under-40s; most people diagnosed are between 50 and 70. The patient eventually becomes entirely paralysed - unable to move, talk, swallow or breathe, but still able to see, hear and feel. In most cases there is no obvious cause - around ten per cent of cases are genetic.

Life expectancy is usually six months to five years and the only licensed treatment is the drug riluzole, which can slow the progression of the disease, but only for up to six months .

More than £300 million is spent annually on cancer research in the UK, the average annual spending on MND research is £2 million.

He quickly lost the use of his hands and legs and the couple were forced to move from south London to North Yorkshire to be close to Neil’s family who could help care for him.

By Oscar’s first birthday, Neil had lost the use of his entire upper body and required a ventilator to push air into his lungs because their capacity had plummeted to just 30 per cent.



He was also forced to give up work because not only had his hands stopped working but the ventilator meant his voice recognition software - provided by his employers so he could still do the job he loved - did not work.



His wife Louise said that one of the cruellest reminders of her situation was that as Oscar became more independent, Neil became less so.



She said at the time: 'Life seems to work in cruel way: the week Oscar picked up his spoon to feed himself, I had to start feeding Neil because he could no longer lift a fork.’

I Am Breathing follows Neil's final months, unable to move without the help of family, friends and a specially-installed winch.

While he still has the ability to speak he reflects on his tragic situation and, with the help of his wife, puts together a letter and memory box for his son Oscar.

Neil (pictured shortly after the birth of Oscar) noticed that his foot started to slap against the floor when he walked. He was concerned he was developing the same condition that killed his father and grandfather

Neil (pictured with son Oscar after his diagnosis in 2008) was desperate to make sure his son had an idea of who his father was. During Neil's final months he wrote a letter - eventually using voice typing - and filled a box with sentimental objects

Neil is pictured a few months after his diagnosis with wife Louise whilst on holiday in Menorca 2008

'I Am Breathing' is a brutally honest account of how motor neurone disease ravages a man and his family. Neil wanted people to know how cruel the disease is and raise awareness and money

Neil remains cheerful and is incredibly witty throughout the film, but he admits he is angry inside.



‘I’m trying to channel [my] anger into raising awareness of this terrible disease. We need money for more research so a cure can be found. Then there will be no need for patients facing this to have to even consider assisted suicide,’ he said.



Viewers learn that Neil has made plans to have his ventilator removed when he cannot speak or swallow for himself. He said he could not understand how he would be of any benefit to his wife or son if he were unable to move or express himself.



The 11-page letter he struggles to write using new voice-recognition software - his lips are steadily losing the ability to form words - shares stories and anecdotes about his life, such as a section explaining how he and his mother fell in love .

The film shows Neil both while he has the disease and before (pictured). We learn that he loved music, mountain walking, music and had a passion for motorcycles

He and Louise met and became friends at Edinburgh, where both were students, but lost touch until they attended a mutual friend’s party in London when they were 29.

By then, both were working in London - he as an architect, she as a costume designer for film and TV.

Within three months of being reunited, the couple were engaged.



They married in November 2004 and were keen to start a family. Louise knew about the high likelihood of the disease affecting Neil before they wed.

Inside the large wooden memory box there is a watch engraved with Oscar’s name that Neil’s mother gave him when Oscar was born, his favourite hat, a Zippo lighter, toys he played with as a child, and his favourite leather jacket.



'I Am Breathing' shows how Neil's close circle of friends were there to help, comfort and laugh with the former architect as his health rapidly deteriorated

Neil tries to anticipate what Oscar might want to know about his father in a future and tells the story of his life from his memories and impressions of love, friends and motorbike rides.

In the film Neil is still keen to be a father to Oscar, despite his profound disability. Oscar sits on his father’s lap and wraps Neil’s arms around him - it’s the nearest Neil can get to giving his son a cuddle.



‘I take off my mask for a few seconds and he gives me a huge smile,’ says Neil. ‘It’s wonderful.’

MND is a terminal illness that kills the body's motor neurones - the nerve cells that send messages to the muscles so the body can move.



A patient's mental capacity and senses remain entirely undamaged however and, explains Neil, this can be one of the the hardest aspects of the disease to deal with.



Neil (pictured, left, on his honeymoon in Sri lanka in 2004) knew there was a family link to motor neurone disease but had hoped that if he did develop it, it would affect him when he was older



In the film he says that a simple itch can be incredibly infuriating and agonising because you don't have the power relieve the discomfort.

There are 5,000 people living with MND in the UK at any one time, but it’s unusual for it to strike people under 40. Most people diagnosed are between 50 and 70.

The patient eventually becomes entirely paralysed - unable to move, talk, swallow or breathe, but still able to see, hear and feel.

In most cases there is no obvious cause - around ten per cent of cases are genetic.



Neil (pictured before his diagnosis) was outgoing and sociable before his devastating diagnosis in 2008. He remained cheerful and very witty throughout his last months

Neil (pictured in 2005) died in February 2009

Life expectancy is usually six months to five years and the only licensed treatment is the drug riluzole, which can slow the progression of the disease, but only for up to six months .

Shortly after his diagnosis he said in an interview: ‘Every new disability brings a terrible sense of disappointment. When Oscar played in the snow for the first time recently, I’d have given anything to help him build a snowman. Instead, all I could do was watch. It was heartbreaking.

'But just the other day, he climbed up my chest, gently removed my ventilator mask and kissed me, then replaced the mask so I could breathe. Moments like that make life still worth living.’

Neurologists cannot confirm if Oscar will develop the illness, despite the strong family link.

The film ends with Neil's death. Although his death is not captured on film, viewers watch his final days and one of the moments that he realises that 'time is being called at the pub', as he puts it.

'I Am Breathing' will be screened internationally on June 21, MND Global Awareness Day, which will launch the UK cinema release. Half of the screening funds will go to MND Association and 50% will go into development.