Audrey Tyrrell, 13, is completing a ‘visual wish list’ before she goes blind after she was diagnosed with Usher syndrome, a rare genetic disease that affects both hearing and vision
A young girl diagnosed with a rare genetic condition which means she will lose her eyesight is completing a ‘visual wish list’ before she goes blind.
Audrey Tyrrell, 13, was diagnosed with Usher syndrome, a rare genetic disease that affects both hearing and vision two years ago. Usher syndrome causes deafness and an eye disease called retinitis pigmentosa (RP) and affects three to six out of every 100k people.
Audrey, from Harwich, Essex, has suffered with hearing loss since birth and has already ticked off seeing Taylor Swift at the Eras Tour, visiting the Eiffel Tower and going to Legoland. Her wish list – which she estimates will take ten to twenty years to complete – also includes seeing the Statue of Liberty and the Northern Lights.
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This year, Audrey has ticked off seeing Stonehenge, going to a Coldplay concert and eating a Cornish pasty in Cornwall. Mum Tracey, 46, said they do not know how long Audrey has left with her sight but they were determined to make memories.
Tracey, a children and families worker, said: “We don’t know at what age Audrey will become visually impaired. From my research, some people with Usher syndrome lose it when they’re teenagers and some are in their early 30s.
“You don’t know how much time you have so we thought we’d act now. Seeing Coldplay this year was spectacular. Everyone wears these light-up bracelets and the whole show is visually spectacular. Audrey also did a driving experience – except she wanted to slowest car and was very cautious!”
Audrey failed her newborn hearing test at two weeks old and doctors told Tracey and dad Andrew that she had bilateral sensorineural hearing loss.
She was fitted with her first pair of tiny pink hearing aids at six weeks old which help Audrey to hear speech clearly. Tracey, a mum-of-four said: “They couldn’t find a cause for her deafness at that time.
“It was really hard 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 right by the sea and I would think would she ever hear the sea?”
At age six, she became an award-winning ballroom dancer after learning her skills from Strictly Come Dancing.
When Audrey was ten, she had an appointment at Great Ormond Street who wanted to explore the reason for her deafness following Andrew’s own recent diagnosis with vision loss.
The family were given the devastating news that Audrey was a carrier of the Usher gene on March 14, 2023. Tracey said: “It was really difficult. She was in Year Six doing her SATs.
“Since Usher syndrome is progressive vision loss, we didn’t want her not to know so we’ve worked on having a really positive outlook. We talked with her about making a visual memories wish list as we want her to see all the things she wants to before she can’t.
“Audrey really wants to go to Cephalonia in Greece. Her dad makes Cephalonia meat pie so she really wants to try a traditional Greek one. We’re slowly working our way through the list. We don’t know if she’s even got ten to twenty years left of vision so we want to get through it as quickly as possible.
“Currently things seem steady. It amazes us with her confidence to go out there and grab life. The list gives her something positive to focus on.”
Tracey said her struggle to deal 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 the telly talking about their children with Usher syndrome.
“It was a comfort to me that at the same time as I was going through through grief of Audrey being diagnosed, it was in the mainstream media. There was somebody out there going through what we’re going through.”
In 2026, Audrey, who runs cross-country races and does ballet, hopes to visit Rome to see the colosseum and Vatican City.
- AUDREY HAS TICKED OFF:
- Visit Stonehenge
- Eat a Cornish Pasty in Cornwall
- See Eiffel Tower
- Go to Legoland
- Do a Mirror Maze
- Complete an Escape Room
- Go on a Driving Experience
- See Taylor Swift at the Eras Tour
- See Coldplay
- Visit a cat cafe
- Going to Centre Parcs
- Shower under a waterfall
- Frozen the musical
- Eat at a French bakery
- Go to a Sephora shop
- Go to a Coldplay tribute
- Go to the Tate Modern
