Girl, 12, with a rare vision disorder, makes a ‘visual wish list’ of things she wants to experience before she goes blind

A young girl diagnosed with a rare genetic condition that means she will lose her sight has started a ‘visual wish list’ of things she must experience before she goes blind.

Audrey Tyrrell, from Harwich, Essex, was diagnosed last year with Usher Syndrome, a rare genetic disease that affects both hearing and vision.

Usher syndrome causes deafness and an eye disease called retinitis pigmentosa (RP) and affects three to six in 100,000 people.

The 12-year-old, who has also suffered from hearing loss since birth, has already seen Taylor Swift on the Eras Tour, a visit to the Eiffel Tower and a visit to Legoland.

Her bucket list – which she estimates will last ten to twenty years – also includes seeing Stonehenge, the Statue of Liberty and the Northern Lights.

Audrey Tyrrell, from Harwich, Essex, was diagnosed last year with Usher Syndrome, a rare genetic disease that affects both hearing and vision. Above Audrey at the Taylor Swift Eras Tour concert

Her mother, Tracey, 45, said they don’t know how much longer Audrey will be able to see but are determined to make memories.

Tracey, a child and family worker, said: ‘We don’t know at what age Audrey will become visually impaired.

‘My research shows that some people with Usher syndrome lose it in their teens, and others in their early thirties.

“You don’t know how much time you have, so we thought we would take action now.

“Audrey made the list in March and we spent our time checking things off.

‘We went to Paris and climbed the Eiffel Tower and we were lucky enough to get tickets for the Eras Tour. It was such a magical day.’

Audrey failed her newborn hearing test at two weeks old and doctors told Tracey and her father, Andrew, that she had bilateral sensorineural hearing loss.

She got her first pair of small pink hearing aids at six weeks old, which helped Audrey hear speech clearly.

One of Audrey’s wishes was to shower under a waterfall

Audrey with her siblings Jack, Emily and Harry in the Effiel Tower as part of Audrey’s wish list

Audrey Tyrrell has a heartfelt hug with her mother Tracey and father Andrew Tyrrell

Audrey Tyrrell became an award-winning ballroom dancer at the age of six after teaching herself while watching Strictly Come Dancing

Tracey, mother-of-four, said: ‘They couldn’t find a cause for her deafness at the time.

‘It was very difficult because when you have a baby you want the best for him and we didn’t really know all the others who were deaf.

“You grieve for the life you know you won’t have. We live near the sea and I would think she would hear the sea at some point?’

At the age of six, she became an award-winning ballroom dancer after learning her skills from Strictly Come Dancing.

When Audrey was ten, she had an appointment in Great Ormond Street to investigate the reason for her deafness following Andrew’s own recent diagnosis: vision loss.

The family received the devastating news on March 14, 2023 that Audrey was a carrier of the Usher gene.

Tracey said: “It was really hard. She was in year six and taking her exams.

‘Since Usher Syndrome is a progressive loss of vision, we didn’t want her not to know, so we worked on getting a really positive outlook.

‘In March this year we talked to her about creating a visual reminder wish list, because we want her to see everything she wants before she can’t.

‘We had a fundraising ball to raise money to tick more off our wish list – the kindness of our community was just enormous.

“She has said that the ball and seeing Taylor Swift have been neck and neck so far.

Audrey Tyrrell was six weeks old with her first set of pink hearing aids

Father Andrew, brother Harry, brother Jack, Audrey, sister Emily and mother Tracey Tyrrell pose for a family portrait

Audrey failed her newborn hearing test at two weeks old and doctors told Tracey and her father, Andrew, that she had bilateral sensorineural hearing loss

Audrey’s ‘visual bucket list’ of things she wants to do before she goes blind

The 12-year-old has suffered from hearing loss since birth and has already seen Taylor Swift on the Eras Tour (pictured), a visit to the Eiffel Tower and a visit to Legoland.

Her bucket list – which she estimates will take ten to twenty years – also includes seeing Stonehenge, the Statue of Liberty and the Northern Lights.

The family received the devastating news on March 14, 2023 that Audrey was a carrier of the Usher gene.

Tracey has launched a GoFundMe page to help the family cover the costs of Audrey’s wish list and provide her with the best experiences possible

‘Audrey really wants to go to Kefalonia in Greece. Her father makes Kefalonia meat pie, so she is eager to try a traditional Greek one.

“We hope to do the Statue of Liberty next.”

Tracey has launched a GoFundMe page to help the family cover the costs of Audrey’s wish list and provide her with the best experiences possible.

She said her struggle to cope with Audrey’s diagnosis was helped by Emmerdale actors Laura Norton and Mark Jordon, whose children also have Usher Syndrome.

She added: ‘At the same time Audrey was diagnosed, the couple were on TV talking about their children with Usher Syndrome.

“It was a comfort to me that as I was going through the grief of Audrey’s diagnosis, this was in the mainstream media.

“There was someone out there going through the same thing we were.”