‘We had never heard of the syndrome before... it’s changed our lives’

FUNDRAISING Kelly Phillips with her daughter Harriet who has Rett Syndrome.  Picture: Paul Jacobs (114232-4)
FUNDRAISING Kelly Phillips with her daughter Harriet who has Rett Syndrome. Picture: Paul Jacobs (114232-4)

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SMILING happily in her mother’s arms, Harriet Phillips is like any other six-year-old girl.

But what sets her apart from others is a rare condition meaning she has slowly lost her ability to walk and talk.

Harriet has Rett Syndrome – a rare genetic disease that only affects girls.

Her mother Kelly, who lives in Gunwharf Quays, said: ‘After Harriet was born we didn’t think there was anything wrong. She was progressing normally and was just about to start walking.’

But when Harriet reached 18 months, Kelly and her husband Simon, 41, noticed their daughter was clearly slowing down with her development.

‘We’ve got two boys – Ethan, 11, and Isaac, eight – so we had something to compare her development to,’ added Kelly.

‘My husband works away from home and so when he would come back he would notice she wasn’t doing things the way the boys had.’

Harriet was diagnosed with Rett Syndrome when she was two.

Kelly said: ‘We had never heard of the syndrome before, and to be honest we weren’t expecting it.

‘We couldn’t believe it when we were told she had the condition.

‘It has changed all of our lives completely as everything centres around Harriet.

‘At the moment her development is like that of a 10-month-old. She can’t walk, talk or dress herself.

‘She also has seizures and breathing difficulties.

‘If she gets to aged 16, she will need one-to-one care.’

Kelly is a member of the Rett Syndrome Research Trust, which solely focuses on finding a cure for the condition.

To raise money and awareness of the condition Kelly, 34, organised a dinner and dance evening at the Best Western Royal Beach Hotel, in St Helen’s Parade, Southsea.

More than 100 people went and raised £12,800.

The money will be put towards finding a cure to reverse the condition, and Kelly hopes to hold another fundraiser next year.

She said: ‘There is no cure or treatment, and that’s what we’re looking for.’

To find out more about the charity, visit reverserett.org.uk.