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FamiliesHealthMost PopularLittle Girl With Genetic Disorder Which Affects Only 1,500 People Worldwide And Means She Cannot Speak Or Play With Toys Has Found Comfort With A DISCO Bathroom

Little Girl With Genetic Disorder Which Affects Only 1,500 People Worldwide And Means She Cannot Speak Or Play With Toys Has Found Comfort With A DISCO Bathroom

A little girl with a genetic disorder which means she cannot speak or play with toys has found joy with a DISCO bathroom.

Ailey Wales, aged five, was born with a rare genetic condition, Wolf- Hirschhorn Syndrome, with only around 1,200 to 1,500 cases have been diagnosed around the world.

The smiley little girl cannot communicate verbally, but joins in with conversations by making noises.

The rare condition means she cannot walk, and cognitive delays mean she cannot comprehend what toys are for, and she struggles to hold them.


But the bath is her relaxing place – she loves bubbles, and hydrotherapy jets are good for her muscles.

But Ailey loved being bathed by her parents, Shannon and Steven, 28 – until they moved house in Irvine, North Ayrshire, to a home without a bath.

Shannon, 25, was told about ‘sensory bathrooms’ with a tub which has LED lighting and jet sprays, and thought it would help Ailey.

She knew the family would never be able to pay for it themselves, so began fundraising – but generous donors chipped in £10,000 to pay for house renovations.

The bath was installed on Friday (Sep 20) in a new downstairs bathroom built especially, which even has disco lights in the ceiling.

Shannon said: “Ailey doesn’t really understand what toys are for, so she just enjoys watching other people playing with them.

“But the bath is her relaxing place – she loves bubbles, and hydrotherapy jets are good for her muscles.

“We’ve got disco lights installed in the ceiling which synchronise with music, and there are LED lights in the bath.”

Bluetooth speakers mean Ailey can listen to her favourite music while she relaxes.

The bathtub cost £7,000 before additional costs of installation and delivery, a new toilet and flooring.

Shannon said: “We wouldn’t have managed it if we had to pay for it all.

“We were thinking we would have to get a loan out, but no-one wants to get into debt.

“I wasn’t keen to ask people, but friends offered to help out.”

Some 80 per cent of the overall cost was covered by North Ayrshire Council, totting up to around £20,000, meaning the family had to raise just less than £10,000.

Astonishingly, Shannon and Steven, a logistics controller, managed to get the funds together between May and July due to the generosity of friends, colleagues and wellwishers.

As well as a downstairs bathroom, a bedroom was also fitted on the ground floor and a fire escape was built.

Shannon said the new bath and bedroom has transformed her daughter’s life and made it easier to take care of her.

And the mum-of-two joked that it is not just Ailey who benefits from the lavish new bathroom.

She said: “A lot of people who have helped us have joked that they can’t wait to come round and have a bath.”

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Ailey’s baby brother Aaron, aged one, also enjoys splashing around in the bath – but she doesn’t like to share.

Shannon, who works part time as a physiotherapy technical instructor, said: “Everybody that meets Ailey, they just fall in love with her.

“She communicates through her smile and her eyes.

“You can see it when she smiles how happy she is.

“But since getting the bath, she does not approve of her little brother being in the tub with her.

“She does not want to share, but he is intrigued by the lights.

“We are extremely grateful to everyone, even strangers have donated.”

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