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Sheppey parents Claire Morrish and David Catley prepare to say goodbye to terminally ill Ezmae

By: Lewis Dyson

Published: 10:00, 04 February 2015

The family of Sheppey child Ezmae Catley say every day with her will be a blessing after they met with doctors to discuss her end-of-life plan.

The youngster suffers from a range of complex conditions including epilepsy, brain damage and dystonia, a rare neurological disorder that causes frequent muscle contractions.

During a stay in hospital over Christmas, doctors were not happy with her breathing and wanted her to wear a BiPAP machine - which she uses at night to help with her airflow - for a longer period.

Claire Morrish with daughter Ezmae Catley when she was younger

The tot is not comfortable using it and would have to be sedated so her parents felt she would have no quality of life being on the machine all day.

Mum Claire Morrish, of Minster Road, Minster, said: “Like any parent you always expect to see your child get better but unfortunately with Ezmae, we haven’t. She’s deteriorated in every aspect.

“We’ve always said we’ll take each day as it comes... - Claire Morrish

“There isn’t much more they can do to help with her because basically everything they’ve tried, it’s been helping to a degree, but it’s not making her any better.”

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Miss Morrish, 34, and partner David Catley, who have known for a long time their daughter has a limited life expectancy, met with a palliative care team on January 22.

She said: “We don’t know when that time is. They can’t give us a time and to be honest we don’t want to know either. It would be like a ticking time bomb.

“We’ve always said we’ll take each day as it comes. She’s a fighter and she’s taken lots on and she’s always come out the other end.

“She could be here for years to come but we need to get that plan in place for when that time comes.”

Ezmae Catley has dystonia, epilepsy and brain damage

Ezmae celebrated her third birthday on Monday and, although she normally spends a lot of her time asleep, Miss Morrish said she was more alert than usual.

“She was like 'it’s my day today so everyone can make a fuss over me',” she said.

The family have contacted the Make a Wish Foundation in the hope of taking Ezmae to Disneyland Paris, as they haven’t done anything as a family since she was born.

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