Milo Hibbert has been diagnosed with a MLD, which means he won't live past ten(Image: Chells Hibbert)

Boy, 5, has years to live after mum knew something wasn't right

by · Liverpool Echo

Boy, 5, has years to live after mum knew something wasn't right

Milo's mum demanded for tests to be done before he was given a terminal diagnosis

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A mum was told her son won’t live past the age of ten after she noticed something wasn't right. Milo Hibbert, five, from Wallasey, was diagnosed with metachromatic leukodystrophy (MLD) in August this year after his speech and balance rapidly deteriorated.

According to the NHS, MLD is a rare inherited disorder affecting mainly the 'white matter' of the brain, causing a progressive loss of physical and, later, mental skills. Milo's mum, Chells Hibbert, noticed something wasn’t right with her son and immediately demanded tests to be done, which confirmed he had the rare disease. 

Family friend Joanne Lamb, 44, from Wallasey, who spoke to the ECHO on behalf of Chells, said: “Milo has also got autism. His nan [Karen Hibbert] and mum noticed he was deteriorating, his speech and balance was off so they started pushing the doctors for an MRI scan. 

"They eventually got it [an MRI] and it turned out he has MLD, which means the stem cells are attacking his brain and shutting his body down. They started to attack his brain and it took over him badly, he is already having to use a wheelchair.”

Joanne said the family been told Milo will only have a life expectancy of between five and ten years old, adding that the illness is “terminal for him". 

She said: “Milo has it quite badly, it's taken hold of him rapidly and he has deteriorated fast. He is a beautiful little boy, he has a gorgeous smile. The first time I ever saw Milo I fell in love with him. 

"The first time I saw him he was clinging to his teddies because of his autism he was getting upset and I got down on my knees to talk to him and just fell in love with him. 

"Every morning since then I would always speak to him and try to help his nan, who always brings him to school. She is a wonder woman, his nan.

Milo with his two younger siblings(Image: Chells Hibbert)

“Everyone at the school adores him. He has beautiful blue eyes and the cutest smile you have ever seen.” MLD is a genetic condition, meaning Milo’s two younger siblings also had to be tested.

His youngest sibling, Saskia, two, also tested positive for the condition, but due to it being caught early she can be treated. Joanne said: “One in 40,000 children could be affected by the illness.

“There are only six children in the UK who have had the treatment that Saskia will be having that will hopefully save her life. But unfortunately it's too late for Milo.”

Saskia, two, has also been diagnosed with MLD(Image: Chells Hibbert)

Joanne wants to do everything she can to give Milo and his family the best support and make as many memories as possible in the time they have left together. She has set up a GoFundMe page to raise money to help the family.

She said: “I want to make it possible for the family to make memories together with Milo while they still can. I just want to be able to take some of the burden off them. Travelling to hospital, paying for parking, eating out, it’s all expensive.

“Having a sick child is horrific enough without all these added expenses, especially as a single mum and I just want to support them however I can. It would be lovely to be able to send them on holiday to Haven or Butlins too as they have never had a holiday as a family before.” You can donate to the GoFundMe for Milo here.

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