A baby born with a rare deformity is having both her legs amputated – before her first birthday.
Freya Gibbs, from near Aberystwyth in Wales, suffers from bilateral tibial hemimelia, which means she was born without shin bones.
Family and friends are rallying around Freya, who also appears to be missing knee and ankle joints.
Her mother Danielle Sparks, 25, has revealed the only treatment available for her daughter is a double amputation.
Freya Gibbs, from near Aberystwyth in Wales, suffers from bilateral tibial hemimelia, which means she was born without shin bones (pictured in the arms of her mother Danielle Sparks, 25, and alongside father Michael Gibbs, 28, and sister Olivia, seven)
Speaking for the first time, she said: ‘Freya’s condition is rare, and it’s even more severe because she has it in both legs.
‘If she had part of her tibias, she could face years and years of surgeries to lengthen them, but she hasn’t.
‘We want her to have the best chance at life and if she has a double through the knee amputation sooner rather than later, she will be able to get on and do everything she wants to.’
Freya is Ms Sparks’ second child with partner Michael Gibbs, 28, and they also have daughter Olivia, who is seven.
The pair knew something was wrong with Freya when she was born, but there was no indication of her condition during her pregnancy.
Ms Sparks, currently on maternity leave from her job as manager of Tesco, added: ‘We knew from scans that Freya was breech but her condition did not show up.
Family and friends are rallying around Freya, who also appears to be missing knee and ankle joints (pictured with her mother, left, and father, right)
‘Because of her position in the womb, they couldn’t see her legs to measure them, and we didn’t think there was anything wrong.
‘But when she was born by emergency Caesarean [section] in Carmarthen, we could see there was a problem.’
WHAT IS TIBIAL HEMIMELIA?
Tibial Hemimelia is a partial or total absence of the tibia and is the rarest form of lower limb deficiency present at birth.
There are two long bones in the lower leg, the thicker one is called the tibia and the thinner one is the fibula.
With Tibial Hemimelia the fibula is present but the tibia is either missing or misshapen. There is a foot deformity and the foot may have additional toes.
Treatment depends on how severe the condition is, including apparatus used to lengthen the leg or amputation in severe cases.
The family, who live in Betws Ifan, near Aberporth, returned home and began to research conditions which could cause legs to curl inwards like Freya’s.
The couple said the eventual diagnosis was a relief and once Freya’s legs are amputated, her parents hope she will adapt to prosthetics.
Mr Gibbs added: ‘When she came out, the doctor held her up and the first thing we said was “What’s wrong with her legs”.
‘They told us not to worry, and it was just the way she’d been lying in the womb, but the next day they said they thought she had club foot.’
A fundraising campaign has already raised more than £500 towards the cost of the prosthetics and adaptations, and Ms Sparks’ colleagues hope to increase the amount.
Several events including a sponsored cycle ride, a sponsored weight loss and a sponsored silence have all been organised.
Ms Sparks said: ‘The response from friends, family and colleagues is greatly appreciated. Every time someone says they’re going to raise money it makes me cry.’
The couple are now keen to raise awareness of her condition and would love to hear from anyone else affected by it.
Ms Sparks added: ‘We have been in touch with two families in England, one in Ireland and one in America, but we haven’t found anyone in Wales. People stare at Freya and we’d rather they ask us what’s wrong.
‘We really want to raise awareness about it. It’s been really helpful speaking to families who have had it, and that’s why we are speaking out.’
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