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Aliyah's deafness and cerebral palsy

Photo: Aliyah's story

Jacqui watched her daughter Aliyah, 13, struggle to overcome the challenges of deafness and cerebral palsy, and endure being bullied. A new school and the National Deaf Children Society's events helped her find new confidence.

Excited chatter filled the reception as children hauling holdalls met parents who’d come to collect them at the end of a National Deaf Children's Society event. At first Jacqui didn’t spot her 11-year-old daughter Aliyah and for a moment thought of the forlorn figure, alone and unhappy, she’d once been.

Then she saw her – laughing, arms linked with friends, happier than ever. It was such a contrast to two years earlier when Aliyah’s confidence was shattered by bullying. “She’s so different now, you wouldn’t believe she’s the same girl,” says Jacqui.

Aliyah was born prematurely at 26 weeks, weighing 920g, less than a bag of sugar. Bleeds to the brain and lungs at three days old meant she was barely expected to survive. “The doctors told us to take things minute by minute,” says Jacqui. “But we were full of hope, couldn’t believe she wouldn’t pull through."

Aliyah grew stronger, then at two months was diagnosed as profoundly deaf. Jacqui and husband John took it in their stride, just grateful their daughter was well. Finally, aged three months, Aliyah came home.

Doctors weren’t sure how the traumatic start would affect her, whether she’d ever walk or talk. As time passed, Aliyah reached all her milestones – sat up, crawled, babbled – though always a bit behind.

Then at two, Aliyah’s hearing started improving - she was moderately deaf and fitted with hearing aids, though she refused to wear them. “As her hearing improved we’d notice her responding to sounds, it was brilliant,” says Jacqui.

With regular speech and language therapy, Aliyah’s speech started to emerge, though it wasn’t clear enough for people outside the family to understand. Jacqui and John were pleased she was progressing well, until at two-and-a-half a hurried paediatric check-up brought shock news.

“As we were leaving, the doctor said ‘By the way, your child has cerebral palsy’,” recalls Jacqui. “I’d no idea what it meant. We knew something was wrong – she walked on tiptoe like a little ballerina and had balance problems, kept tripping up. I went home to look it up and was devastated – there was no cure. It seemed she’d be unable do all kinds of things.”

Specialists tried physiotherapy, a botox injection in her leg, splints and special shoes to keep her heels flat on the floor, but nothing worked.

When she started mainstream primary school, Aliyah began wearing her hearing aids and slowly her speech improved.

She spent her time with older girls, who mothered her. But aged eight, when the older girls at school left, Aliyah’s classmates started bullying her. “They’d shove her and call her names. She’d ask ‘Why does everyone hate me?’ It was heartbreaking,” says Jacqui.

Despite frequent complaints to the school, nothing changed.

“Aliyah endured two years of hell, she suffered nightmares and started sleepwalking,” says Jacqui. “Then one day she broke down. With her head in her hands, sobbing, she said ‘I can’t cope any more’, and refused to go back.”

After searching online, Jacqui found a school for deaf children. They visited and Aliyah was assessed to see if she met their admission criteria.

“Aliyah came out smiling,” recalls Jacqui. “She said ‘Mum, everyone has hearing aids!’ She started that year and loved it. She made friends, began learning sign language – her confidence soared.”

The family then attended a National Deaf Children's Society fun day, with face painting and activities. Aliyah enjoyed it so much she was keen to go on another National Deaf Children's Society event, so signed up for a five-day fun-packed holiday.“She had an amazing time,” says Jacqui. “Her confidence had grown even more – she said ‘Mum, you’d better book me on the next one!’”

But a setback came early the next year when Aliyah started experiencing severe pain in her legs. “Poor Aliyah was in agony,” says Jacqui. “Doctors said the only answer was surgery.” Over the next few months, though it eased a little, they were told surgery was inevitable.

“We knew the National Deaf Children's Society would look after her whatever her needs, it’s not just about deafness.”

Aliyah was booked on another National Deaf Children's Society holiday that summer, and Jacqui wondered whether she’d be able to join in. But a surprise was in store.

“We knew the National Deaf Children's Society would look after her whatever her needs, it’s not just about deafness,” says Jacqui. “And she had a fantastic time, made friends, went windsurfing, mountain-biking, even learnt to swim! But also there was a huge improvement in her legs, the pain vanished. Doctors said her legs were much ‘looser’ thanks to all the activity and she no longer needed surgery – they said to keep it up!”

Now looking at Aliyah’s fantastic progress, Jacqui and John can barely believe it. “She’s so settled, confident and independent,” says Jacqui. “Her speech is amazing, you wouldn’t know she was deaf. She has sleepovers and weekends away with friends. They arrange it amongst themselves, then she tells me!”

“A girls’ group Aliyah attends has an annual short story contest and she always gets up to speak about her National Deaf Children's Society holidays. This year she came joint first! I remembered how upset she used to be and felt so proud of her. She can’t imagine not having the National Deaf Children's Society events in her life.”

Many of our youth events like the National Deaf Children's Society holidays that Aliyah attended have been generously funded by BBC Children in Need.