YOUNG AJ Bailey has been busy spreading awareness of life-limiting illnesses and his mum says she couldn’t be more proud of him.
AJ, now eight, 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 he faces, he’s managing to live a normal life.
Earlier this year, AJ travelled to London to meet former Little Mix star Jesy Nelson after being personally invited to take part in a project raising awareness of rare genetic disorders.
Both AJ and his mum Annalise 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 said the way that AJ goes about raising awareness of the illness is incredible and that she couldn’t be more proud.
She added: “Both AJ and myself were interviewed by Jesy to talk a little bit about his condition - spreading awareness and talking about how it’s affected him.
“It’s gone viral on social media.
“I’m so proud of him and the way he is.
“The way he’s able to participate and spread awareness about his condition is incredible.”
AJ’s hard work and never-say-never attitude has earned him a place on the shortlist of the Young Conquerer category at this year’s Young Champions Awards.
Annalise admits he was a little nervous when being interviewed by the Chronicle but said afterwards he loved doing it.
She added: “He got a little shy in his interview for the awards.
“But he said to me afterwards ‘mum, I felt better for that’ and I asked if he enjoyed it and he said that he did because he gets to spread awareness.
“I’m just so unbelievably proud, and even at school as well he’s up for a United Learning Award for his achievements for this.
“His devotion for spreading awareness at such a young age is just unbelievable.”
