By Faye Mayern via SWNS
A young girl diagnosed with a rare genetic condition which means she will lose her eyesight has begun a ‘visual wish list’ before she goes blind.
Audrey Tyrrell, 12, was diagnosed with Usher syndrome, a rare genetic disease that affects both hearing and vision last year.
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 from 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 Stonehenge, the Statue of Liberty and the Northern Lights.
Mom Tracey, 45, 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.
“Audrey created the list in March and we’ve spent our time trying to tick things off.
“We’ve been to Paris and up the Effiel tower and we were very fortunate 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 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 mom-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 was 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.
“In March of this year, 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.
“We had a fundraising ball to raise money to tick more off on our wish list – the kindness of our community was just immense.
“She’s said that so far the ball and seeing Taylor Swift were neck and neck.
“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 hoping 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.
She 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 grief of Audrey being diagnosed, it was in the mainstream media.
“There was somebody out there going through what we’re going through.”
AUDREY HAS TICKED OFF:
Stand on the Eiffel TowerGo to LegolandSee Taylor Swift at the Eras TourShower under a waterfallFrozen the musicalEat at a French bakeryGo to a Sephora shopGo to a Coldplay tributeGo to the Tate Modern
