08242017Headline:

Saltaire family plead for help for girl with rare condition (From Bradford Telegraph and Argus

Saltaire family plead for help for girl with rare condition The family of a two-year-old with a rare chromosome deficiency needs £3,000 to keep her safe day and night.

Layla Boocock, of Saltaire, is one of 21 people in the world known to have Chromosome Deletion 5Q 14.3, which means she is missing a vital part of her genetic make-up.

Her mum Sophie, 23, says no-one knows how she will develop, if she will ever be able to walk or communicate like other children her age.

Now the family is trying to raise enough money to buy a Safe Space cot where Layla, who is epileptic and has a habit of banging her head, will be able to sleep and play without the risk of hurting herself.

To get the money-making off the ground, a family fun day will take place tomorrow at Saltaire Methodist Church from 1.30pm.

A bouncy castle, crafts, raffle for a giant cupcake, stalls, nail painting, face-painting and visits from Mickey and Minnie Mouse are among the attractions lined up for the day.

Layla’s dad Antony, her uncle and a family friend are also planning a sponsored wax coming up soon.

“We get really scared about Layla hurting her head,” said Mrs Boocock, who also has a five-year-old son, Bailey. “She doesn’t understand what she’s doing. She had a red mark on her head and just laughs but it can bring on her fits.

“The Safe Space would do what it says and keep her safe. It has padded high sides with a mattress in it and a clear zip-up front so we can see her at all times.”

Layla will soon be starting an early Government-funded nursery place at Owletts Family Centre which has a sensory room to help her develop. She also has an hourly-visit once a fortnight from a specialist development worker to help build her communication skills.

“She’s two but she’s still a baby, like a six-month-old in her head,” said Miss Boocock. “We don’t know what the future holds, if she’ll ever walk or talk, but we are doing our best.”

The family is also in touch with a Facebook group of parents of other children with the same chromosome deletion.

Miss Boocock said: “They are like our extra little family now, even though we’ve never met. Some are in America, Amsterdam, and a few in this country. Just talking to them helps a lot – we can talk to our own families, doctors and support workers but these other families really do know what we are going through.”

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