A baby born with a rare condition is having both her legs amputated – before her first birthday.
Family and friends are rallying around little Freya Gibbs who suffers from Bilateral Tibial Hemimelia, which means she was born without shin bones.
Devastated mum Danielle Sparks, 25, says Freya also appears to be missing knee and ankle joints, and revealed the only treatment available is double amputation.
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 Danielle’s 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 Danielle’s pregnancy.
Danielle, who is currently on maternity leave from her job as manager of Tesco in Aberystwyth in Wales, added: “We knew from scans that Freya was breech but her condition did not show up,” said
“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 caesarian in Carmarthen, we could see there was a problem.”
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.
Danielle and Michael say the eventual diagnosis was a relief and once Freya’s legs are amputated, her parents hope she will adapt to prosthetics.
Michael 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 Danielle’s colleagues at Tesco hope to raise a lot more.
Several events including a sponsored cycle ride, a sponsored weight loss and a sponsored silence have all been organised.
Danielle 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.
Danielle 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.”
To donate, visit www.justgiving.com/crowdfunding/freyas-steps
Leave a Reply