Strictly Come Dancing star Rose Ayling-Ellis has been left "terrified and heartbroken" after it was reported that a successful gene therapy trial had taken place and "cured" a toddler's deafness.
Opal Sandy was treated for her deafness shortly before her first birthday and six months on, she can hear sounds as soft as a whisper after having the "miracle" gene therapy which replaces faulty DNA causing her type of inherited deafness.
As news of the toddler having her hearing restored was widely shared, the British Deaf Association (BDA) and prominent deaf individuals such as Rose Ayling-Ellis have hit back at reports claiming it was a "cure" for the "disease".
The BDA and others see the news as putting the deaf community at risk and said in a statement: "There must be a detailed and comprehensive discussion of the implications of medical interventions such as gene therapy before this type of procedure is approved for widespread use.
"Wherever Deafness is concerned, the Deaf community – of which the BDA is the Deaf-led representative member organisation, recognised by international authorities such as the World Federation of the Deaf and the European Union of the Deaf – must be central in this conversation."
Ayling-Ellis took to her Instagram yesterday to express how she felt about the gene trial, and alongside an image of her as a child 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. My first reaction was feeling terrified and heartbroken. It feels like the end. Let me explain why.
"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?"
Giovani Pernice and Rose Ayling-Ellis won Strictly Come Dancing back in 2021
BBC
She added she was worried that the inclusivity that many deaf individuals had fought for would be "thrown out the window" and was adamant she did not see her deadness as a "disease or condition".
"I don’t need relief from it. My deafness has given me many opportunities, and my life is richer because of it. Why would I want that to be gone? 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. Can you help me out here? Let’s spread positivity. Leave a comment about your favourite thing about being deaf or being with deaf people?"
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Rose made her feelings clear on the new gene therapy for deafness
GETTY
Ayling-Ellis' post was flooded with support from her TV friends and fans, with Gethin Jones noting: "@yvonneycobb is now a work colleague and a friend, she’s taught me so much. More than anything she is a proper good laugh and normalises (if that’s the right word) everything. Yvonne is a class chef, we’ve learnt so much BSL just through cooking. Thanks for the post Rose."
Love Island star Tasha Ghouri simply commented with a red love heart emoji, whilst Gavin Lilley praised: "Spot on. Being deaf makes me who I am and I wouldn’t change anything."
One proud fan penned: "Goodness me Rose you are an inspiration that letter is all inspiring to the deaf community and us hearing, you keep banging the drum Rose.
"As a Hearing person I am mesmerised by the way you react with everyone both hearing impaired and hearing you are a joy in this world. Keep being you gorgeous lady." (sic)
