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Boy born with kidney in thigh is ‘one of a kind’

Making up for lost time: Hamish wasn't reaching normal milestones due to his rare condition PICTURES: SWNS

A TEN-YEAR-OLD boy is suffering from a unique genetic disorder which has left him with a kidney — in his thigh.

Hamish Robinson is thought to be the only person in the world who is missing the 7p22.1 chromosome.

Because the condition is unique to him and does not have a formal name doctors refer to it as the ‘Hamish syndrome’.

It means he has a fully functioning kidney at the bottom of the right side of his pelvis — at the top of his right thigh — due to a structural malformation.

But medics have decided not to remove it because it isn’t deemed a health risk at the moment.

The youngster was born five-and-a-half-weeks premature on May 29, 2008, seemingly healthy but tiny, weighing just 2lbs.

Little fighter: Hamish weighed just 2lbs when he was born and was placed in an incubator

Following complications with feeding, he was discharged from hospital, but wasn’t reaching the normal milestones like talking.

It marked the start of a devastating journey in which the illness took hold of Hamish and he had to be constantly monitored by a paediatrician.

Worried about his development, mum Kay Robinson, 48, a former lecturer, took him to see a geneticist when he was 17 months old. Within weeks, it was discovered he had the unique chromosomal depletion, which no one else in the world suffers from, she was told.

The condition means he has hearing in only one ear, suffers severe asthma attacks, has spinal problems, learning difficulties and requires a voice computer to speak.

Hamish’s fully functioning pelvic kidney in his right thigh could prove life-threatening in the future.

His second kidney is located correctly and although it is shaped like a horseshoe it is fully functioning, according to Kay.

The condition, however, has left him predisposed to develop bowel cancer when he reaches adulthood.

Kay, from Over Hulton near Bolton, Greater Manchester, said: ‘That was the thing that really made me fall apart.

‘It’s so hard knowing his condition is unique because no one knows what to expect.

‘Research is ongoing and his geneticist has written a paper on Hamish, but there’s no knowing what’s going to happen.’

Kay, pictured with Hamish, added: ‘The kidney is fully functioning but it’s the potential of what could happen in the future.

‘There haven’t been any health problems with it so far. Because it is functioning and he’s not had any issues they have left it alone and not removed it.

‘It’s not like it moved, it’s part of his physiology. It’s a congenital condition which developed while he was a foetus.

‘It has to be watched. This is what makes it so difficult because doctors don’t know what could arise, we have to deal with it as it comes.

‘It is just the way he is structured. It is unlikely to affect him just now but more likely when he becomes a bit older.

‘If he develops any urinary infection, when the kidney isn’t in the normal place it means it’s dangerous for him.’

Born prematurely, it was assumed that Hamish was a healthy, albeit small baby.

‘We didn’t realise it was anything genetic,’ said Kay, a single parent. ‘I had a virus but I was just a carrier so it didn’t pass on to him.

‘Really, the alarm bells didn’t ring until 17 months later.

‘He was hitting some milestones but wasn’t hitting others.

‘He was certainly not speaking at all, then one day when he was 17 months old he said “mamma” and then I waited another six years to hear anything else.

‘It was only later that I suspected things weren’t right.

‘He wasn’t speaking, he wasn’t doing the sort of things he should have been doing.’

Hamish had his first operation, for a hernia, at the age of four months and has been under eight consultants, including an endocrinologist, a gastroenterologist and an immunologist.

Kay, who gave up her career as a lecturer in international relations to care for Hamish, was determined that he should have a mainstream education.

‘He’s such a personable and sociable boy with a magnetic personality,’ she added. ‘I just knew putting him in a specialist school would limit him.’

Despite struggling with reading, writing and speaking, Hamish has refused to be be beaten by his illness.

He has appeared in a pantomime for the past three years, is a regular at Jump X-Treme and will shortly be trying for his black belt in karate after taking up the sport at the age of five.

‘He just takes it all in his stride,’ said Kay. ‘I don’t know how he does it.

‘Being with him has inspired me. He’s been the biggest blessing of my life.’