A YOUNGSTER who has been diagnosed with a one in a million condition hasn’t let it hold him back and he had the chance to meet with former Little Mix star Jesy Nelson during her campaign to highlight similar rare illnesses.

AJ Bailey was diagnosed with Alstrom syndrome when he was just five years old.

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.

It’s left AJ with limited eyesight and despite all the difficulties the eight-year-old faces, he’s managing to live a normal life.

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 week, AJ travelled to London to meet Jesy after being personally invited to take part in a project raising awareness of rare genetic disorders.

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.

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

Annalise added: “She’s such a lovely woman.

“It was nice to just talk to her on a mum-to-mum level because you’re both going through such a difficult time.

“You don’t realise how much it impacts you as a parent because you’re on autopilot in a way.

“You’re busy making sure that their needs are met all the time, taking them to hospital, making sure everything’s ok with them sometimes you don’t get time to sit and reflect on your own feelings.

“AJ loved it he was smiling from ear-to-ear.

“It was nice to be involved in the campaign and get some awareness out there.”

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

“He knows that there’s other children and families as well that’s just like him because the charity put on events every year for families to come together,” she added.

“It’s amazing how they all just get on, and it’s lovely to see.

Vice principal of Hunningley Jack Parker added: “We are incredibly proud of AJ.

“He showed such maturity, courage and character throughout this opportunity, and we couldn’t be more delighted to see him using his voice to raise awareness for others.

“He represented his family, himself, and Hunningley brilliantly.”