Boy 6 has unique condition that has left him dumb

Publish date: 2024-05-06

Mackenzie Fox-Byrne's illness, which does not yet have a name, was previously unknown to doctors, who have no idea how it will develop.

His mother, Sharon Fox-Byrne first noticed something was amiss when his development appeared to be behind that of her other children, Kamara, 14, and Katie, 12.

At three months old, he was still not lifting his head from his cot, found it difficult to hold down food and had trouble sleeping.

Doctors at first feared he might have the muscle-wasting disease Muscular Dystrophy, but instead tests results showed a much more bewildering picture.

Miss Fox-Byrne, 40, of Market Drayton, Shrops, said the call from Wessex Clinical Genetics Service at Southampton University Hospital left her stunned.

She said: "They knew it was unique and told me excitedly that they had found something rare that no one else has.

"Unfortunately, that was all they could tell me. They couldn't tell me how he is going to progress or whether he might fall ill in the future.

"No-one else on earth has ever had this condition."

Miss Fox Byrne said: "It's quite terrifying to be told he is the only person in the world to have this condition.

"But for all his problems Mackenzie is a lovely boy. He's always giving me kisses and cuddles and likes to sleep next to me because he still has trouble sleeping.

"Although we worry about what might happen to him in the future, I just try to put it out of my mind. You could go crazy thinking about it.

Karen Temple, professor of medical genetics at Wessex Clinical Genetics Service confirmed Mackenzie was a totally unique case.

She said: "I think to say Mackenzie is one of a kind is certainly correct.

"In this case there is a rearranging of the chromosomes that is unique in him.

"We have to learn what we can from the little boy as he grows up.

"The problem with Mackenzie isn't that he has got genes missing - as is the case sometimes - it's that he has got extra parts.

"This little boy has had this chromosome problem since he was conceived, we can learn from how he is now and that helps us to predict his future."

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