LARA, 23, THOUGHT HER SON, MARSHALL, NOW FOUR, WAS LIKE ANY OTHER LITTLE BOY HIS AGE.

AS A HAPPY AND HEALTHY TODDLER HE LOVED KICKING A BALL AROUND AND PLAYING WITH HIS CARS, BUT SUDDENLY AT THE AGE OF THREE HE STARTED SUFFERING FITS AND TERRIFYING NIGHTMARES.

HE WAS DIAGNOSED WITH AN EXTREMELY RARE CONDITION CALLED LATE INFANTILE BATTEN DISEASE AND IS NOW ONE OF ONLY A HANDFUL OF CHILDREN IN BRITAIN WITH THE DEADLY DISORDER WHICH WILL SLOWLY PARALYSE, BLIND AND KILL HIM BEFORE HE REACHES HIS TEENS.

THERE IS NO CURE OR TREATMENT AND LARA IS FORCED TO THINK ABOUT THE TYPE OF FUNERAL SHE WILL HAVE FOR HER SON, BUT THE BRAVE BOY REFUSES TO LET IT GET HIM DOWN AND HAS PENNED A HEARTBREAKING LETTER THANKING ALL OF HIS WELL WISHERS FOR THEIR SUPPORT.

 

Marshall is facing death from a rare and incurable illness at just four years old. But determined to live life to the fullest, the lovable lad has penned a heartbreaking letter describing his ordeal. The brave boy is one of only a handful of children in Britain with deadly Batten disease which will slowly paralyse, blind and kill him before he reaches his teens.

 

Marshall spent the first three years of his life as a happy, healthy toddler who loved nothing more than kicking a ball around and playing with his cars. But he suddenly started suffering fits and terrifying nightmares and was diagnosed with a variation of the nervous disorder known as Late Infantile Batten Disease.

 

Marshall now suffers from tremors, seizures and blackouts and there is no cure or treatment for him. He was recently treated to a trip to Disneyland Paris with money raised by well-wishers, including staff at the hospice where his gran, Elsie, works as a nurse. Marshall insisted on sending them a personal thankyou letter.

 

Helped by his mum and gran, he wrote: ‘My name is Marshall and I am four-and-a-half years old. Until 12 months I ago I was a normal little boy.

 

‘I loved playing football and going down the slide in the park and paddling in the sea. I was always laughing and loving. Well, I still am very loving! Then I started having fits, lots of different types. And I began to have trouble talking and things I could do before I couldn’t do anymore. The doctor did lots of tests and told my mummy and nana in April that that I have Late Infantile NCL, a form of Batten disease. It makes me very special because there are only about 20 to 30 children like me in Britain.

Lots of horrible things are happening to me very quickly now. My hands shake so much I can’t play with my toys very well and I have to be fed. And I lose my balance all the time so I can only walk a little bit and need to be steadied when I do. I fall over all the time and I get covered in bruises but I rarely cry. And there are lots of things I can’t eat any more because I choke and I can hardly talk anymore.’

 

Marshall’s heart-rending note also thanks his local newsagent and drivers at the taxi firm where his granddad, Nobbie, works for raising £1,000 for the trip.

 

He still loves watching Toy Story, Cars and Mickey Mouse Club and thoroughly enjoyed Disneyland. His letter added:

‘It cost so much money but I had everything I wanted and more because my nana’s friends at the hospice had a collection for me and my granddad’s work friends (he has been a taxi driver for about a hundred years) also collected lots of money for me. So I just wanted to say a really big thank you to the staff at the hospice and the taxi drivers and Raz at the newsagents and send you all a big hug. Love from Marshall xxx’

 

Proud mum Lara decided to publish Marshall’s letter in the hope it would inspire efforts to find a cure for Batten disease. Her son is one of only 24 children in the UK currently diagnosed with the disease which usually causes death between the ages of eight and 12.

 

Lara and Marshall’s soldier dad, Michael, originally thought he was suffering from epilepsy but she says the truth is far more painful. She said: ‘There is no cure, not even a treatment. It’s basically too rare and not profitable enough for the people who research medications to look into it because there are not enough children like Marshall in the world to make it worthwhile for them financially. Marshall will eventually go blind. He will lose the ability to walk completely soon. He’s not able to feed himself any more. He can’t eat lumps so he will have to be tube fed eventually. Children with Batten disease become bed ridden and then die without being able to see or communicate.

 

This has changed my whole life. I have to live every day knowing that my child is going to die. And all I can do is watch. There is nothing I can physically do. There is no treatment and I feel completely helpless. As a parent you want nothing more than to protect your children from everything you can and that chance has completely been taken away from me. There are no realistic clinical trials that I can put him on, no doctors that can put him on medication that he hasn’t already tried. There’s just nothing. Every day is a struggle. Every day is a challenge to get up to actually see the point in anything any more.’

 

Lara added: ‘I want people to know that there is a childhood disease that hasn’t got a cure and that every childhood disease should have a cure. It shouldn’t matter how many children suffer from it, there should at least be some sort of treatment for those children to give them a chance. It makes me angry that companies that make billions of pounds through other diseases can’t even find it in their hearts to at least try to invest into Batten disease. These children deserve to have a happy childhood. Even if I can’t save my own child I will do all I can to raise enough awareness to save someone else’s child, to save someone else’s family going through what my family is going through.

 

Having to think about your child’s funeral before they are five years old is horrible, but it’s the reality – there is nothing in the world that can save him. There is no point in having hope. We’re just all trying to come to terms with the fact that he is going to die.’

 

Lara, who has no other children, said Marshall was too young to understand the full implications of the devastating disease that will likely kill him before he reaches his teens. She is separated from Marshall’s soldier dad, Michael, and is giving up her job to look after the poorly lad full-time.

 

She said: ‘Marshall is too young to understand exactly what is going on but he only has to look up at the tears in mummy’s eyes to know something is badly wrong. Everyone he meets want to help him because he’s such a kind, loving little boy. He wrote the letter because he had a really great time on his trip and wanted to thank them all. Despite everything he’s going through, Marshall wants everyone else to be happy. I’m so proud of him.’

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Lara and Marshall’s heartbreaking story appeared in Love It Magazine titled ‘Watching my Baby Die’…