Rett Syndrome sufferer Alice, 8, from Scunthorpe has her Disney dream come true

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Wednesday, September 12, 2012
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Scunthorpe Telegraph

A girl who suffers from a disorder which stunts her child development is preparing to go on a dream holiday to see Mickey Mouse.

Alice Graves, 8, of Grange Avenue, Scunthorpe was diagnosed with Rett Syndrome when she was just two-and-a-half years old.

  1. RETTsyndromeSUFFERER

    Alice Graves with mum Sarah and Dave Wilson who has donated £1,000 to pay for a trip to Disneyland Paris

It is a condition that developed through a faulty gene from birth and only showed physical signs when it became aggressive.

When Alice was between nine and 21 months old, the condition became noticeable.

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Speaking about how the condition affects her daughter, mum Sarah, 42, said: "Alice never sat up on her own. Some children have these skills but Alice never had them. She used to be able to use her hands but she's since lost that skill.

"I think there are more than 100 mutations so it can affect those who have it differently."

The condition affects around one in 10-15,000 in the UK.

Mrs Graves said: "We had already realised there was going to be something different with Alice. We found the support really good and once it was officially diagnosed, we were able to access the right information.

"Alice's condition stops her body producing protein and protein helps development, so there has been no further progress of development. It means her body doesn't get the messages to do everything – so Alice cannot even chew."

Alice has a gastric tube fitted and takes medication to prevent possible seizures.

"If Alice isn't feeling well enough to eat, I give her high protein milk through her tube and she recovers better then," said Mrs Graves.

In many ways, Alice is like any other youngster – enjoying watching Mickey Mouse Club House and attending school at St Luke's in Scunthorpe.

Now she is set to meet her cartoon hero on a four-day trip to Disneyland Paris in March thanks to a £1,000 donation.

David Wilson, 47, from Scawby, lost his daughter Alexa to heart problems in May, 2009 while she was awaiting a heart transplant.

In her memory, he organises annual fundraising balls and from this year's event at Forest Pines in Broughton raised more than £11,000.

He decided to donate £1,000 of that to Alice and her family.

Mr Wilson said: "We donated some to the Children's Heart Units at Newcastle and Leeds and because we raised such a large amount, we asked the Disney Ward at Scunthorpe General Hospital if they had someone who we could help with the money, as Alexa had been treated on the ward too."

Disney Ward nurse Sharon Vickers was the person who nominated Alice to benefit.

Alice's dad Lee, 41, added: "The last time I went on any rides was a few years ago at Flamingo Land but we're looking forward to the trip."

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