He’s the little boy whose mystery condition is baffling experts up and down the country.
Specialists at Great Ormond Street Hospital and leaders of a genetic study in the North East are among those trying to diagnose the cause of Zak McCarthy’s illness.
His loved ones realised something was wrong when he did not smile as a baby and tears rolled down his face as he was fed.
The two-year-old now suffers from a long list of problems, including autism, being unable to walk unaided and talk and he has to be fed through a tube in his stomach. His grandmother Denise Jackson, 56, an auxiliary nurse at Houghton Health Centre, said: “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 they idea is that he doesn’t want for anything, because we don’t know how long he is going to have.
“They have said it’s something rare because the consultant paediatricians have not come across whatever it is yet.”
We don’t know what the future holds, so they idea is that he doesn’t want for anything, because we don’t know how long he is going to have.Gran Denise Jackson
Doctors at Sunderland Royal and genetic researchers in Newcastle, who are establishing a DNA profile for the Bournmoor youngster, are among those who are carrying out tests and working alongside Zak’s family as they treat him.
They have established there is an issue with a part of Zak’s brain which deals with memory and spacial navigation, that has fused bones in his hands and arms, has problems with his central nervous system and difficulties seeing and hearing. Zak, who goes to the nursery at Sunningdale School and is at risk of developing epilepsy, can take steps with a walker, but is unable to roll over or crawl.
A decision was made to peg feed him after concerns he could be aspirating, where food goes down the wrong pipes and enters the lungs and airways, and despite enjoying food when he was weaned, he has since developed a phobia of food and its smell.
Denise, who has six grandchildren and lives with husband Colin, 56, who runs Easington Lane Pet Foods, added: “Most of the time is in his own little world with no understanding of everyday normalities, and recognition of people around him.
“It’s like he’s in his own bubble.”
Zak, lives with mum Josene, 25, her partner Callum Smith, 23, and siblings Kye McCarthy, six, and Darcy Smith, eight months.