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Family’s fight for Evie-Anne

NINE-month-old Evie-Anne Peel was born with a rare genetic condition - which affects only one baby in every 10,000 .

NINE-month-old Evie-Anne Peel was born with a rare genetic condition - which affects only one baby in every 10,000 .

Now her family are raising money to buy a specialised support chair to help their little girl, who was diagnosed with 1p36 deletion syndrome.

Mum Michelle and dad Mark also wants to raise awareness for the condition - after facing months of uncertainty themselves.

For while Evie-Anne was suffering from epileptic seizures, low muscle tone and visual impairment, it was only this month that the experts confirmed the under-lying condition.

“She was born at Heartlands Hospital by caesarian section and spent several weeks in an incubator,” said 35-year-old Michelle.

“Eventually she came home, but we began to notice that Evie-Anne wasn’t like other babies - she was drinking less and less, didn’t smile and wasn’t making eye contact.”

The little girl also began to suffer seizures - even with medication, she can have over 20 a day.

“It took some time before she was diagnosed with the syndrome,” said Michelle. “It’s very rare - there are only a handful of reported cases in the UK.”

Now together the Chelmsley Wood family is getting money together to buy the chair which combats hypotonia - weak muscles - one of the symptoms of the condition.

The equipment will cost several thousand pounds, but should last Evie-Anne until her fourth birthday.

To drum up support, a charity night will be held at the Coleshill Hotel on September 24. Two-days later, a family fun day will taking place at St Andrew’s Church, in Pike Drive.

* To find out more or book tickets for the charity night go to http://evie-annes-adventures.vpweb.co.uk.

You can also drop off any donations to her appeal at the Solihull News, 150 High Street, Solihull B91 3SX.

 

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