But today the inspiring lyrics of Ethan Peacock - “I am strong, I am the one, one in 14million, unique and resilient” - ring in the ears of millions of children battling to overcome adversity, as he has so bravely done.
The 14-year-old suffers from Norrie Disease - one of the rarest illnesses in the world which, in his case, means he has very limited vision and is classed as blind.
It has affected his life in ways most children could never imagine, as he has had to learn braille to read and needs daily supervision at Colchester Royal Grammar School not just to take part in lessons but also get around the corridors.
But despite never being able to run around and play like his classmates and having many of his school holidays taken up with medical appointments, his mother Theresa Peacock says he “always looks on the positive side of life”.
And no more is that demonstrated by how he and his brother Jasper, who play in their own band called The Thunderbolts, have produced a single to not only raise money for Norrie Disease research but inspire a generation.
“This song was all about being strong and resilient, something I’m determined to be,” said Ethan, who released Unique on Thursday, February 28 to mark Rare Disease Day.
“If it makes other people realise they’re not alone then I’ll be happy. I wanted to help the charity that has made a huge difference to my life.”
He also said: “I’ve always been conscious of being different but it has definitely got harder as I’ve got older.
“There are more expectations as you get older and situations you need to be able to tackle by yourself, such as spending extra time on school work and homework to keep up with others and remembering new braille codes and how to use specialist equipment, so I can be independent.”
Mrs Peacock said: “The single reflects Ethan’s views on life.
“He always looks on the positive side of life and rather than dwelling on the negative he wants this single to inspire others to be strong.
“There are times when he finds it really difficult. I remember him saying he wished he wasn’t blind.
“Everything is harder work - there are things that other people easily do which he finds harder.
“But resilient is a really good word for him. He focuses on the challenges and he copes amazingly well.”
Click here to download the single.
What is Norrie disease?
Norrie disease affects mainly boys and is a rare X-linked genetic condition that causes blindness or severe sight impairment at birth.
A secondary symptom that can begin in early childhood is progressive hearing loss. Other symptoms can include autism, cognitive impairment and delayed development.
The Norrie Disease Foundation was set up to support the UK community affected by Norrie disease and to promote vital research to slow the trajectory of the disease, in particular the hearing loss.
There is currently pioneering research at UCL Great Ormond Street Institute of Child Health underway to see if the hearing loss can be treated through gene therapy.
To volunteer, donate or find out more, visit www.norriedisease.org.uk
Unique by The Thunderbolts
Sometimes it’s hard to be me
Feeling alone in society
Faced with challenges everyday
Many obstacles in my way
Emerging from the storm
Feeling like I’ve been reborn.
‘Cos I am strong
I am one
One in 14million
Unique and resilient.
I am strong
I am one
One in 14million
Unique and resilient.
With friendship and discovery
We can overcome adversity
Come together and believe
That together we’ll achieve
Fighting battles everyday
I know we’ll find a way.
I am strong
I am one
One in 14million
Unique and resilient.
‘Cos I am strong
I am one
One in 14million
Unique and resilient.
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