Parents hope to raise awareness of toddler’s rare condition

Samantha and Simon Walton with their daughters Maddison, six, and 15-month-old Mila. Picture: Rebecc

Samantha and Simon Walton with their daughters Maddison, six, and 15-month-old Mila. Picture: Rebecca Murphy - Credit: Archant

She is a happy and bubbly 15-month-old toddler. But Mila Walton has a rare skull problem which has caused her to have an abnormally shaped head.

The youngster, who lives with her parents Samantha and Simon and sister Maddison in Eye, was not diagnosed with craniosynostosis when she was born.

But as Mila was growing up, Mrs Walton noticed the front of her skull looked more prominent. Although it is starting to affect her eyes and ears, Mila has not had any problems with her development.

Mrs Walton said he wants to raise awareness of the condition, which affects an estimated one in 1,800 to 3,000 children.

The 31-year-old said: 'I think there is a lot of misdiagnosis with it. The doctors thought it was fluid between her head and her skull which would disappear, but as she has got older it's just got worse.


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'It is so rare and this is why we want to get this out there to help other parents and doctors who may not have even seen it.

'If you think something is wrong there is nothing wrong with pushing for a referral.'

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Mila will undergo a four-and-a-half hour operation at Oxford Children's Hospital which will see part of her forehead replaced with parts from the top of her skull.

This will be the third time the couple have travelled down with their daughter, after the two previous operations were cancelled.

'I think we do not let it bother us until we are there,' said Mrs Walton. 'But it has got to be done. I have spent nights crying, but she is one of the lucky ones as it does not affect her too much. It is traumatic for Maddison, who is only six.

'This is Mila's first operation and we do not know if there will be more operations in

the future but she will have check ups and eye and hearing tests.'

The operation will also help doctors find out whether the condition is genetic or not.

Mrs Walton said she is thankful for craniosynostosis support groups including Cranio Bears and Cranio Ribbons which send out personalised bears and ribbons which have messages of support from other families who have a loved one with the condition.

For more information about the condition visit http://www.gosh.nhs.uk/

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