Rose Ayling-Ellis admitted she was “heartbroken” and “scared” as she took to Instagram on Saturday to discuss the world’s first gene therapy trial for the deaf.
The Strictly Come Dancing winner revealed she has strong feelings towards the trial after an 18-month-old girl who was born deaf can now hear after taking part.
The EastEnders star was supported by her former dance partner Giovanni Pernice as she shared a sweet photo of herself as a child, along with some headlines about gene therapy.
She said, “Here’s a picture of me as a toddler. If I had been born a few years later, my life could have been very different.
‘Today it was reported that a trial of gene therapy has taken place. I knew it was going to happen, but I didn’t expect it so soon.
Rose Ayling-Ellis admitted she was ‘heartbroken’ and ‘scared’ as she took to Instagram on Saturday to discuss the world’s first gene therapy trial for the deaf
The Strictly Come Dancing winner revealed she has strong feelings about the trial after an 18-month-old girl who was born deaf can now hear after taking part
The EastEnders star was supported by her former dance partner Giovanni Pernice as she shared a sweet photo of herself as a child, along with some headlines about the gene therapy
‘My first reaction was to feel terrified and heartbroken. It feels like the end. Let me explain why.’
Rose wondered if she will be the “last deaf generation” after the success of the new process.
She continued, “Imagine a world where everyone is ‘normal.’ What will happen to our story, culture, language and identity? Will we be the last deaf generation and end up in a museum somewhere?’
“Deaf people have existed throughout human history. Who decides that their lives are not worth being integrated into society? Who assumes we want to be ‘fixed’? Where will they draw the line?’
The actress expressed her concern that inclusivity could be “thrown out the window” and stressed that she did not need “relief” from her deafness as it has given her many opportunities.
She added: “My life is richer for it. There are many deaf people doing great things! Why would we tell them they are broken when in fact they are winning?’
‘To make matters worse, this was released during Deaf Awareness Week. The week should be about embracing and spreading awareness about our culture. Not something to overcome.”
‘(Please respect the decision the family has made for their little girl. Like any parent, they do what they think is best for their child.
With a baby photo, she wrote: ‘Imagine a world where everyone is ‘normal’. What will happen to our story, culture, language and identity? Will we be the last deaf generation and end up in a museum somewhere?’
The actress expressed concern that inclusivity could be ‘thrown out the window’ and insisted she did not need ‘relief’ from her deafness as it has given her many opportunities
In the comments, Rose also added that she believes “hearing individuals make decisions for deaf individuals without fully understanding their way of life.”
Rose was supported by her former Strictly professional dancer Giovanni, who shared three red heart emojis in the comments
“This is not a rant directed at them in any way. Rather, it is a diatribe directed at society that makes us all believe that deafness will only bring us suffering, when in reality it is quite the opposite.)”
In the comments, Rose also added that she believes “hearing individuals make decisions for deaf individuals without fully understanding their way of life.”
She wrote: “I strongly support the right of deaf people to make their own choices, whether they want to or not.
‘However, there is concern when it comes to the fact that 90% of deaf children are born into hearing families. While these families want the best for their child, it is important to remember that ultimately the decision is not up to the baby.
‘It’s common for hearing people to make decisions for deaf people without fully understanding their way of life. This is what I find concerning.”
Rose was supported by her former Strictly professional dancer Giovanni, who shared three red heart emojis in the comments.
British girl Opal Sandy, 18 months, has recovered her hearing after becoming the first person in the world to take part in a groundbreaking gene therapy trial.
She was born completely deaf due to a condition called auditory neuropathy, which is caused by the disruption of nerve impulses traveling from the inner ear to the brain.
Thanks to a ‘one and done’ gene therapy being trialled in Britain and worldwide, Opal’s hearing is now almost normal – and could improve further.
The little girl from Oxfordshire, who has a genetic form of auditory neuropathy, was treated at Addenbrooke’s Hospital, which is part of the Cambridge University Hospitals NHS Foundation Trust.
British girl Opal Sandy, 18 months, has recovered her hearing after becoming the first person in the world to take part in a groundbreaking gene therapy trial
The little girl was born completely deaf due to a condition called auditory neuropathy
Professor Manohar Bance, an ear surgeon at the trust and lead researcher on the study, said the results were “better than I had hoped or expected” and could potentially cure patients with this type of deafness.
He said: ‘We have results from (Opal) that are very spectacular – so close to normal hearing recovery. So we hope it can be a possible cure.”
Auditory neuropathy can be caused by an error in the OTOF gene, which is responsible for the production of a protein called otoferlin. This allows cells in the ear to communicate with the auditory nerve.
To correct this flaw, ‘new era’ gene therapy – from biotech company Regeneron – delivers a working copy of the gene to the ear.
In Opal’s case, she received an infusion of the working gene in her right ear during surgery last September.
Her parents noticed improvements in her hearing within four weeks, but 24 weeks later the results were particularly impressive.
Jo Sandy, a 33-year-old high school geography teacher, and her husband James, 33, who works in car manufacturing, said they were “stunned” when they realized Opal could hear without the need for a cochlear implant.
Opal now enjoys hitting her cutlery on the table to make noise and enjoys playing with toy drums, a piano and wooden blocks.