A toddler dubbed ‘the boy in a bubble’ who can’t communicate with the outside world has baffled doctors and only responds to pop music – including MEAT LOAF.
Zak McCarthy, aged two, cannot talk or walk unaided, has a phobia of food and his condition is so rare Britain’s top medics are stumped.
He shuns traditional children’s toys, hates loud noises and cannot communicate with his parents at all.
But his mum says they have found something the autistic lad responds to – he loves to listen to certain pop music.
Despite having poor hearing Brave Zak gets excited whenever he hears songs by Meatloaf, Cascada, Omi and Ellie Goulding.
Zak’s mum, Josene Pearson, 25, of Houghton-le-Spring, Sunderland, said when he hears music he likes he flaps his arms in the air, throws his head back and squeals.
She said: “He can’t walk, talk or play with other children. He is sick when he smells food and cannot roll over or crawl.
“He can only walk when somebody is holding him up, or he is using a walker, and can shuffle a little on his bum.
“He doesn’t interact with me at all. He knows me but he doesn’t really acknowledge me. He doesn’t like being around people because of his autism.
“But he loves music. He can’t laugh but he does a bit of a belly chuckle when he hears high-pitched singing and pop music.”
“He loves the song ‘Paradise by the Dashboard Light’ by Meatloaf and he’s a big fan of ‘Cheerleader’ by Omi.
“He’s also a fan of Cascada, Ellie Goulding and Avicii but he’s not particularly fussed by One Direction and he doesn’t like Katy Perry.
“He hates her song, ‘Roar’. When he doesn’t like a song, he puts his hands above his eyes and covers his face with his arms.”
“He also hates ‘Trumpets’ by Jason Derulo. When it came on the radio he hated it so much that he nearly had a fit.
“He was in his walker at the time and he covered his face, closed his eyes and started shaking.
“I turned it off and rushed over to him because I thought he was having a fit but as soon as the song stopped he was fine.”
As well as having a love of high-pitched voices and pop music, Zak has an unusual taste in toys.
He is fascinated by blinds, cables and hoovers – “all the things little children shouldn’t play with” – and shuffles over to them as best he can on his bottom.
“He doesn’t respond to normal toys but I have a Henry hoover and he loves the tube on it,” said Josene, who is also a mum Kye, six, and Darcy, eight months.
“He also loves playing with blinds and curtains and anything like that.
“We have to make sure everything is turned off because he goes for cables and wires too.
“Zak has started to make a few noises but they are nothing close to words, and he has no way of communicating with other people at all.
“But when he is happy, his eyes go wide, his mouth comes open and he sort of smiles.”
Zak did not smile until he turned two. Josene first noticed something was wrong when he turned six weeks old – and then reached twelve weeks – and had still not smiled.
She took him to a doctor who noticed that he had stiff arms and legs and could not lift his head properly – but they could not work out why.
A decision was made to peg feed him after concerns he could be silently choking, and despite enjoying food at the beginning, he has since developed a phobia of food and its smell.
Doctors at Sunderland Royal and genetic researchers in Newcastle are among those who are carrying out tests on Zak and have now established that there is an issue with a part of his brain.
They have also worked out that he has fused bones in his hands and arms, problems with his central nervous system, difficulties seeing and hearing and is at risk of developing epilepsy.
But despite running four MRI scans and countless tests, doctors are no closer to figuring out what his condition actually is.
Josene and Zak’s grandmother, Denise Jackson, 56, even took him to Great Ormond Street hospital – but to no avail.
Zak, who turns three in November, is now on a Deciphering Developmental Disorders (DDD) study, which involves taking genetic samples from both parents in the hope of finding a diagnosis.
“It makes it so hard. It is just devastating.” said Josene, who is a full-time mum and carer to Zak. “It is so frustrating that nobody can get to the bottom of it.
“Nobody seems to know what it is. The doctors and health professionals have never seen anything like it before.
“We don’t know what the best thing to do for him. If the top doctors don’t even known then I’m not going to know.
“It is so frustrating to watch him. He wants to do things but he can’t.
“I just want as normal a life as possible for him.”
Josene’s mother, Denise, who is an auxiliary nurse at Houghton Health Centre, added: “We’re learning to cope.
“He’s almost three years old now and has to be carried about, but that’s not going to be possible forever.
“There are things that he needs. We don’t know what the future holds, so the idea is that he doesn’t want for anything, because we don’t know how long he is going to have.
“Most of the time he is in his own little world with no understanding of everyday normality, and no recognition of people around him.
“It’s like he’s in his own bubble.”
Denise has now set up a fundraising page to help pay for a soft outdoor surface for Zak’s back garden, so that he can go outside and use his walker and get used to moving about by himself.
His family also hope to raise enough money to be able to make adaptions to their home in the future, to make it safer for Zak to play and move about in.
To donate, visit: www.gofundme.com/y8gjy8g
