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"It's Heart Breaking I Can't Change It"

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7:01am 16th April 2014

A St. Agnes mum has told Pirate FM her daughter's life-limiting disorder is "absolutely devastating."

Michelle Hough's seven year-old daughter suffers from Alstrom Syndrome.

The chances of getting it are a million to one, with only 60 people being officially diagnosed in the UK.

Little Millie is the only one with it in Cornwall.

It affects all her vital organs.

Now Michelle is campaigning to raise awareness of the condition that will eventually take little Millie's life.

She said: "It affects her eyes, it affects her heart, it affects her kidneys, it affects her liver, her hearing.

"At the moment she is registered blind, she has got hearing loss and she has got heart failure, and it's likely she'll need a heart and kidney transplant at some point in the future.

"As a parent you would do anything for your kids, it's just heartbreaking to know that I can't make it right I can't change it, nothing I can do can really make that better for her, but we can make her life better, we can make it more enjoyable and allow her to enjoy everyday as a little girl."

A family friend with only one leg ran the London marathon to raise money for Millie.

7:01am 16th April 2014

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