A young woman diagnosed with a rare genetic condition that means she will lose her sight has started a “visual bucket list” of things to experience before going blind.
Audrey Tyrrell, from Harwich, Essex, was diagnosed last year with Usher syndrome, a rare genetic condition that affects both hearing and vision.
Usher syndrome causes deafness and an eye disease called retinitis pigmentosa (RP) and affects three to six in every 100,000 people.
The 12-year-old, who has also suffered from hearing loss since birth, has already been looking forward to seeing Taylor Swift on the Eras Tour, visiting the Eiffel Tower and going to Legoland.
His bucket list, which he estimates will take ten to twenty years to complete, 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 condition 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 long Audrey has sight left, but they were determined to make memories.
Tracey, a children and family worker, said: “We don’t know at what age Audrey will become visually impaired.
‘According to my research, some people with Usher syndrome lose it when they are teenagers and others are in their early 30s.
‘You don’t know how much time you have, so we thought we’d act now.
‘Audrey created the list in March and we’ve spent our time trying to tick things off.
‘We’ve been to Paris and climbed the Eiffel Tower and we were very lucky to get tickets for the Eras Tour. “It was such a magical day.”
Audrey failed her newborn hearing test when she was two weeks old and doctors told Tracey and her father, Andrew, that she had bilateral sensorineural hearing loss.
At six weeks she was fitted with her first pair of small pink hearing aids, which help Audrey hear speech clearly.
One of Audrey’s wishes was to shower under a waterfall.
Audrey with her siblings Jack, Emily and Harry at the Effiel Tower as part of Audrey’s bucket list.
Audrey Tyrrell sincerely hugging 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.
Mum-of-four Tracey said: ‘They couldn’t find a cause for his deafness at the time.
‘It was very difficult because when you have a baby you want the best for them and we didn’t really know everyone else who was deaf.
‘You grieve for the life you know they won’t have. We live by the sea and I wonder if I would ever hear the sea.
At the age of six, she became an award-winning ballroom dancer after learning her skills on Strictly Come Dancing.
When Audrey was ten, she had an appointment on Great Ormond Street who wanted to explore the reason for her deafness following Andrew’s recent diagnosis of vision loss.
The family received the devastating news that Audrey was a carrier of the Usher gene on March 14, 2023.
Tracey said: ‘It was really difficult. He was in sixth grade taking his SAT exams.
‘Since Usher syndrome is a progressive loss of vision, we didn’t want her to not know about it, so we worked to have a really positive outlook.
‘In March this year we spoke to her about making a wish list of visual memories, as we want her to see all the things she wants before she can’t.
‘We had a fundraising dance to raise money and tick more things off our wish list; The kindness of our community was simply immense.
‘She has said that until now dancing and watching Taylor Swift were hand in hand.
Audrey Tyrrell at six weeks with her first pair 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 when she was 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 been delighted to see Taylor Swift on the Eras Tour (pictured), visit the Eiffel Tower and go to Legoland.
His bucket list, which he estimates will take ten to twenty years to complete, also includes seeing Stonehenge, the Statue of Liberty and the Northern Lights.
The family received the devastating news that Audrey was a carrier of the Usher gene on March 14, 2023.
Tracey has launched a GoFundMe page to help the family cover the costs of Audrey’s wish list and give her the best experiences possible.
‘Audrey really wants to go to Kefalonia in Greece. Her father makes Kefalonian meat pie, so she really wants 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 give her the best experiences possible.
He said his struggle to deal with Audrey’s diagnosis was helped by Emmerdale actors Laura Norton and Mark Jordon, whose children also have Usher syndrome.
He 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 at the same time I was going through the pain of Audrey’s diagnosis, it was featured in the mainstream media.
“There was someone out there going through what we’re going through.”
