Rose Ayling-Ellis admitted she is ‘heartbroken’ and ‘frightened’ as she discussed the world’s first deaf gene therapy trial on Instagram on Saturday.
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 following taking part.
The EastEnders star was supported by her former dancing partner Giovanni Pernice as she shared a sweet photo of herself as a child along with a number of the headlines about the gene therapy.
She said: ‘Here is a photo of me as a toddler. If I had been born a couple of years later, my life could have been very different.
‘Today, it was reported that a gene therapy trial has taken place. I knew that it was going to happen, but I didn’t expect it so soon.
Rose Ayling-Ellis admitted she is ‘heartbroken’ and ‘frightened’ as she discussed the world’s first deaf gene therapy trial on Instagram on Saturday
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 following taking part
The EastEnders star was supported by her former dancing partner Giovanni Pernice as she shared a sweet photo of herself as a child along with a number of the headlines about the gene therapy
‘My first reaction was feeling terrified and heartbroken. It feel like the end. Let me explain why.’
Rose went onto question whether she will be the ‘last deaf generation’ following the success of the new trial.
She continued: ‘Imagine a world where everyone is ‘normal’. What will become of our story, our 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 that we want to be ‘fixed’? Where will they draw the line?’
The actress expressed her concern that inclusivity could be ‘thrown out of the window’ and insisted she did not need ‘relief’ from being deaf as it has given her many opportunities.
She added: ‘My life is richer because of it. There are many deaf people out there that are doing great things! Why should we tell them that they are broken when, in fact, they are winning?’
‘To add insult to injury, 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 made by the family for their little girl. Like any parent, they are doing what they believe is best for their child.
Alongside a baby photo, she wrote: ‘Imagine a world where everyone is ‘normal’. What will become of our story, our culture, language, and identity? Will we be the last deaf generation and end up in a museum somewhere?’
The actress expressed her concern that inclusivity could be ‘thrown out of the window’ and insisted she did not need ‘relief’ from being deaf as it has given her many opportunities
In the comments, Rose also added that she believes that ‘hearing individuals make decisions for deaf individuals without fully understanding their way of life’
Rose was supported by her former Strictly professional dancer partner Giovanni who shared three red heart emojis in the comments
‘This is not a rant directed towards them in any way. Rather, it is a rant directed towards the society that makes us all believe that being deaf will only bring us suffering, when in reality, it is quite the opposite.)’
In the comments, Rose also added that she believes that ‘hearing individuals make decisions for deaf individuals without fully understanding their way of life’.
She penned: ‘I strongly support the right of deaf individuals to make their own choices whether they want this or not.
‘However, there is a 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’s important to consider that the decision being made is not ultimately up to the baby.
‘It’s often the case that hearing individuals make decisions for deaf individuals without fully understanding their way of life. This is what I find concerning.’
Rose was supported by her former Strictly professional dancer partner Giovanni who shared three red heart emojis in the comments.
The British girl Opal Sandy , 18 months, has had her hearing restored after becoming the first person in the world to take part in a groundbreaking gene therapy trial.
She was born completely deaf due to the condition auditory neuropathy, which is caused by the disruption of nerve impulses travelling from the inner ear to the brain.
Now, thanks to a ‘one and done’ gene therapy being trialled in the UK and worldwide, Opal’s hearing is 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 Cambridge University Hospitals NHS Foundation Trust.
The British girl Opal Sandy , 18 months, has had her hearing restored 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 the condition auditory neuropathy
Professor Manohar Bance, an ear surgeon at the trust and chief investigator for the trial, said the results were ‘better than I hoped or expected’ and may cure patients with this type of deafness.
He said: ‘We have results from (Opal) which are very spectacular — so close to normal hearing restoration. So we do hope it could be a potential cure.’
Auditory neuropathy can be caused by a fault in the OTOF gene, which is responsible for making a protein called otoferlin. This enables cells in the ear to communicate with the hearing nerve.
To overcome the fault, the ‘new era’ gene therapy – from biotech firm Regeneron – delivers a working copy of the gene to the ear.
In Opal’s case, she received an infusion containing the working gene to her right ear during surgery last September.
Her parents noticed improvements to her hearing in just four weeks, but the results were particularly impressive 24 weeks later.
Jo Sandy, a 33-year-old secondary school geography teacher, and her husband James, 33, who works in car manufacturing, said they were ‘gobsmacked’ when they realised Opal could hear without the need for a cochlear implant.
Opal now loves slamming her cutlery on the table to make a noise and enjoys playing with toy drums, a piano and wooden blocks.
