Little boy, 6, loses the ability to walk and talk in TEN DAYS due to rare brain wasting condition... but his heartbroken mum vows to make him smile in the time they have left

  • Miller Cashen has a rare neurodegenerative disease called PKAN
  • It causes the rapid deterioration of his brain and central nervous system
  • Once healthy, now Miller, 6, will never be able to walk or talk again
  • His mother Sophie said: 'It's day by day. We don't know his life expectancy'

Little Miller Cashen still smiles despite knowing he will never walk or talk again. 

The six-year-old's brain is wasting away as he battles a rare degenerative illness which is likely to claim his life one day.

In just over a year the bright and energetic little boy's condition has already deteriorated to the point where he struggles to move and cannot speak or eat. 

Tragic: Miller Cashen was struck down by a rare genetic condition last year

Tragic: Miller Cashen was struck down by a rare genetic condition last year

Brave: Despite losing the ability to walk or talk, Miller's mother said he had not once cried or complained

Brave: Despite losing the ability to walk or talk, Miller's mother said he had not once cried or complained

The decline in Miller's health has been caused by pantothenate kinase-associated neurodegeneration (PKAN), a disease associated with the accumulation of iron deposits in the brain. 

PKAN is a neurodegenerative genetic condition that will gradually see Miller lose brain function and control of his muscles. 

Other symptoms of the disease include involuntary, rapid muscle movements and occasionally seizures.  

Mother Sophie, from the Sunshine Coast, told Daily Mail Australia about the heartache of watching her 'cheeky' little boy's steep decline. 

'It's already taken his ability to talk, eat and walk,' she said. 

'It's happening quite quickly. Within 10 days last year he went from his normal self to not being able to do these things.'

Happy: Miller's mother Sophie said her son loved going to school when he could

Happy: Miller's mother Sophie said her son loved going to school when he could

Devastating: Miller's mother Sophie (pictured) was devastated by her son's rapid deterioration

Devastating: Miller's mother Sophie (pictured) was devastated by her son's rapid deterioration

It is estimated that PKAN affects just one in every one million people and research is so scarce that Sophie has little idea what the future holds for her son.

WHAT IS PKAN?

PKAN is a rare disease that affects approximately four thousand people worldwide.

The characteristic sign of PKAN is the accumulation of iron deposits in the brain. 

PKAN causes the deterioration of the brain and the central nervous system.

Symptoms include random muscle movements and difficulty with speech and walking.

It typically develops within the first 10 years of life.

There is no specific treatment for PKAN, and remedies typically focus on relieving pain and certain symptoms. 

Source: National Organisation for Rare Disorders

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'We don't really know enough to tell how the regression will happen,' she said. 

'It’s basically day by day. We don’t know his life expectancy or anything.'

Miller is 100 per cent dependent on his mother, who washes him, feeds him and gives him his medication every day. 

'He is fed through a tube in his belly. I do that for him four or five times a day,' she said. 

'I have to give him medicine 13 times a day for comfort. Showering and bathing are big jobs too.'

Despite needing such dedicated care, Miller still went to school when he could and absolutely loved being around his classmates, Sophie said.

Another thing that made him smile was visiting the zoo and seeing animals. 

'Last year we had a big birthday at the local zoo. That’s when I found out he has a very deep connection with the animals. 

'Any type of animal. He loves animals and he loves his friends and family.' 

Keeps me going: Sophie said knowing her son was happy despite the condition was enough for her. He had a particular love for animals, she said

Keeps me going: Sophie said knowing her son was happy despite the condition was enough for her. He had a particular love for animals, she said

Although Miller could no longer speak to his mum, his beaming smile was enough for her to know when he was happy and comfortable. 

'It’s strange how you don’t need words to communicate. With his eyes he says so much.

'He is the strongest person I’ve ever met. Not once has he complained. 

'He never cried about it. He just wakes up and deals with it. That’s what keeps me going - knowing that he is happy.'

Sophie said she was sharing her story in the hope of one day finding a cure for her son's condition. 

'Miller is going through some things at the moment,' she said.  'I can see him weakening from the waist down. 

'No one has even heard about PKAN. If more people know and donate money for research we might be able to save our kids.'

Anyone looking for more information on Miller's disease can visit his Facebook page: https://www.facebook.com/Millersjourneywithdisabilities/  

Sophie said that anyone wishing to fund PKAN research should visit the website of Amelia Cragen, a little girl in America who is also battling the disease. 

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