The girl is the only known person in the world with the condition that does not have a name

A schoolgirl has been diagnosed with a severe growth condition so rare she has no name after being dwarfed by siblings half her age. Melanie Gardner, 34, was alarmed when she realized how smaller her six-year-old daughter Harlow was than her peers – while playing at nursery.

Worried Melanie and her husband Peter, 37, a commercial gym manager, took Harlow to her GP and she was referred for specialist tests. The results showed that little Harlow had a rare genetic mutation – a form of skeletal dysplasia, a category of disorder that affects bone and cartilage growth – in August 2022.

They were told that Harlow’s condition is so rare that it doesn’t have a name and that she is the only known person in the world with it. It’s causing problems not only with her growth and mobility, but she’s being fed through a tube – and she’s awaiting a kidney transplant because she’s in kidney failure.

She is also at risk of developing lung, heart, eye and liver problems. But because there are no other known cases of her condition, doctors can’t tell the family what her future looks like — or how long she’ll live.

Melanie, a part-time barman and carer for Harlow, from Portsmouth, Hampshire, said: “I took her to the doctor just to be careful but I thought she was small because we’re quite a small family. He was only four or five years old. when doctors found her genetic mutation and said there was no one else like her.

“He knows he has bad bones and bad kidneys, but he asks, ‘mummy, why is it just me?’ – It’s horrible. He’s doing so well, but he’s on nine meds a day and it’s hard for him.

“And it’s scary to think that at any moment something could go wrong, because there is no regulation. Research needs to be done to get some answers for Harlow.”

Harlow, six, (centre) with her brothers Oakley and Hartley, both three

Harlow – who has three younger brothers Parker, five, and twins Oakley and Hartley, three – had a normal birth and the family didn’t suspect a problem until she was four. Melanie noticed in a video sent by Harlow’s nursery in 2020 that Harlow was particularly underdeveloped compared to her peers.