AN inspiring youngster with a one in a million condition has been nominated for a Young Champions award for becoming an advocate for children with rare genetic disorders.

Despite having sight and hearing challenges due to Alstrom Syndrome, eight-year-old AJ Bailey is overjoyed that he ‘just gets to be himself’.

The rare condition which affects less than one in a million people is characterised by a progressive loss of vision and hearing, a form of heart disease that enlarges and weakens the heart muscle.

His mum, Annalise Sykes-Bailey, told the Chronicle: “He’s thriving he loves school and meeting new people.

“He’s got such a caring character.

“When AJ was seven weeks old, he took critically ill with sepsis and multi-organ failure we couldn’t quite understand why.

“Before leaving the hospital, AJ’s eyes started presenting wobbly and uncontrollable.

“That’s when he was referred to the eye department and he started with heart medication to treat cardiomyopathy.

“But his eyes continued to decrease and after some testing he was diagnosed with Alstrom syndrome.

“AJ’s severely sight impaired, so he’s registered blind.

“He can see a limited amount but not full vision.

“So with his vision, we’ve got a rough estimate between later adolescence to early adulthood, that’s when he’ll potentially go fully blind.

“AJ does have mild hearing loss as well.

“He uses his cane to guide him safely.

“But he’s doing amazingly.”

Last month, AJ travelled to London to meet former Little Mix star Jesy Nelson.

AJ was personally extended an invite to take part in Jesy’s project that aims to raise awareness of rare genetic disorders, a mission close to her heart.

Jesy’s twins were diagnosed with spinal muscular atrophy (SMA) type one, a muscle-weakening disease.

Both AJ and his mum were interviewed by Jesy and took part in a photo shoot aimed at highlighting the realities facing families of children with rare conditions.

Annalise says the Alstrom Syndrome UK charity have been a massive help with AJ’s development along with Hunningley Primary School, where he attends.

She added: “We’re really proud about everything about AJ, with his condition he doesn’t let anything bother him or hold him back, he just gets on with it.

“He amazes us every day.

“He represented himself for a newsletter about Alstrom syndrome and he said that although his sight and hearing was a challenge - he was just happy to be himself.

“He’s such a caring boy and he is forever trying his best in school.

“The school have spoken to us and they can’t believe how well he’s doing.

“He gives everything 100 per cent and he does an amazing job of spreading awareness about his condition.”