Girl, 6, battling genetic condition so rare she’s the only one diagnosed with it

A GIRL of six is battling a genetic condition so rare that she is the only one diagnosed with it.

It affects bone and cartilage growth, leaving Harlow Gardner still under a metre tall.

Harlow Gardner, 6, is battling a genetic condition so rare that she is the only one diagnosed with it

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Harlow Gardner, 6, is battling a genetic condition so rare that she is the only one diagnosed with itCredit: SWNS
Harlow will need a kidney transplant, with mum Melanie, above, the donor

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Harlow will need a kidney transplant, with mum Melanie, above, the donorCredit: SWNS

Her sight is failing, too, and she will need a kidney transplant, with mum Melanie the donor.

Harlow has to be fed through a tube and finds it painful to walk.

And as there are no other known cases, doctors cannot even say how long she might live.

Melanie, 34, from Portsmouth, said despite it all, Harlow is a “confident, sassy little thing”.

She and husband Peter, 37, were both found to carry the rare WDR19 gene but their three other kids are unaffected.

Melanie and sister Abigail Godden, 33, plan to take on the Three Peaks challenge to raise money to support the family during the transplant.

Melanie said: “It’s been really really tough, emotionally it’s affected me a lot.

“Her condition is very dominating, everything is about Harlow.

“Because she doesn’t really look like there’s anything wrong with her, it makes it hard for it to sink in.

“When something is so rare and not understood it’s also easy to dismiss – and when it doesn’t have a name it’s easily forgotten.

“It would change everything for us to get some answers.”

Harlow’s fundraising page can be found here.


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