Appeal to give little Evie a sensory room of her own
- Credit: Archant
Evelyn Rust-Dilnot is almost four but has the abilities of a six-month-old baby, the result of a rare condition which means she has an abnormally small head and brain.
She can’t sit-up, walk or talk but her family is convinced a sensory room could help. They have launched a Gofundme page to raise money.
“We could tell almost straight away there was something wrong,” said mum Becky Dilnot, who gave birth via a planned caesarean. “But we left it for a few days because we thought the shape of her head might have been affected by the birth.
“It soon became clear there was something wrong and at her six week check-up I raised it with our doctor. He referred her to the Queen Elizabeth Hospital in King’s Lynn and they sent her to Great Ormond Street in London.
“She was diagnosed with microcephaly at four months old. The doctors explained there was no cure and they could not tell us what her life expectancy is likely to be or even say whether she will talk or walk.
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“It is so rare that when she had a seizure and had to go to hospital the paramedic was ‘googling’ it on the way to find out about the condition.”
Evelyn, who is known as Evie, is a happy little girl who is still mostly bottle fed with a special formula although she does eat solids which are pureed like baby food.
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“We have to make sure everything is well mashed up for her because she hasn’t learnt how to chew,” said dad James Dilnot.
“It is hard work looking after her because it is like having a newborn baby but we feel blessed; she is such a happy little girl.”
Now she is learning to use her eyes to communicate with regular occupational and physiotherapy sessions.
Evie, who has two five-year-old half-brothers: Tyrone Dilnot and Daniel Rust from their parents’ previous relationships, also visits a sensory and physio room to help her development.
But she can only use it about once two months which is why the family, from Marshland St James, want to raise £7,000 to provide Evie with her own.
Her mum said: “Our bungalow is just not large enough for us to create one inside so we want something like a cabin in the garden which would be fully equipped. “There is nowhere for Evie to have physio in the house so the cabin would be used for that and we are also planning to home school so it would be used all the time.”
The family is hoping people will take Evie to their hearts and support them.
“We are quite a private family but we realise the only way to get Evie’s appeal out there is through the local paper,” said Mr Dilnot.
To make a donation visit gofundme.