Ipswich: Brave Skyla suffers more than 400 fits EVERY day

Four year old Skyla Creamer has a rare condition which means she has epileptic fits 400 times a day.

Four year old Skyla Creamer has a rare condition which means she has epileptic fits 400 times a day. Skyla's sister, Isobelle (7), is taking on a five mile charity walk to raise money for an epilepsy charity. Skyla (left) and Isobelle are pictured at home in Ipswich. - Credit: Archant

Meet Skyla Creamer, the little girl who has FOUR HUNDRED epileptic fits a day – and who doctors said wouldn’t live to see her fifth birthday.

Despite the medics’ grim predictions, the Ipswich youngster’s family are preparing a celebration to mark her turning five on June 17.

And mum and dad Avril and Dave – and protective older sister Isobelle – couldn’t be more proud of determined Skyla, who they say has an infectious will to live.

Mrs Creamer, 34, described receiving the doctors’ diganosis was “heartbreaking”.

Skyla, who is blind and has a developmental age of six weeks, was born premature at 32 weeks.

She suffered brain damage and on her first birthday Mrs Creamer and her husband were told their youngest had a rare form of epilepsy – Lennox-Gastauts syndrome, along with cerebral palsy and a series of other conditions.

Her epilepsy means Skyla’s brain is in a constant state of seizure, causing her to suffer around 400 physical fits every day – more than one every three minutes.

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Mrs Creamer, who is a full-time carer along with her husband, said: “We were told Skyla wouldn’t make her fifth birthday so we have always aimed for that.

“She needs around the clock care from us because she can’t do anything for herself and we have to keep her safe when she fits.

“She has no understanding of the world around her.

“Doctors say she won’t reach teenage years but we don’t think about that.

“We live each day as it comes – and I do think it has made us appreciate life more.

“Skyla can’t enjoy different colours but when we go out and the sun falls on her face you can see her light up. It is incredible.

“She is a very special little girl.”

The youngster will turn five on June 17 and to celebrate the milestone, her sister Isobelle, seven, is planning a five-mile charity walk in her honour.

Isobelle, a pupil at Pipers Vale Primary School, was herself also diagnosed with epilepsy at the end of last year.

“It was a huge shock,” Mrs Creamer said.

“Isobelle came to me telling me she was having fits in the night but doctors said to begin with she was just copying her sister.

“Hers is a benign form of epilepsy, which means there is no cause for it – unlike with Skyla whose condition is caused be her brain damage.”

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FIERCELY protective of her little sister, Isobelle, is the first one to tell people Skyla has brain damage when they stare in the street, added Mrs Creamer.

On June 15, Isobelle, accompanied by her family will walk from the family home in Morland Road – where they live next door to another inspirational youngster, Brooke Lawrance – to the East Anglia’s Children’s Hospice in St Augustine’s Gardens, where Skyla receives care, and on to Ipswich Hospital, where she was born.

The seven-year-old is trying to raise as much money as possible for the charity Epilepsy Sucks to fund special pillows to keep children who suffer fits at night safe in their sleep.

“Isobelle has always looked out for her little sister, she is the first to come to her defence if people stare while we are out,” said Mrs Creamer.

“She wanted to do something for Skyla to mark her birthday and as it turns out the route to and from the hospital is exactly five miles, which worked out perfectly.”

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