FAMILY and friends are rallying around a five-month-old baby who will have to have both legs amputated before her first birthday.
The Cambrian News reported “Little Freya Gibbs has a rare condition called Bilateral Tibial Hemimelia, which means she was born without shin bones.
Mum Danielle Sparks, who is on maternity leave from her job as a manager at Tesco in Aberystwyth, says Freya also appears to be missing knee and ankle joints, and the only treatment available to her little girl is a double amputation.
“Freya’s condition is rare, and it’s even more severe because she has it in both legs,” she said.
“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 25-year-old Danielle’s second child with partner Michael Gibbs, 28. 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.
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 diagnosis was a relief. Once Freya’s legs are amputated, her parents hope she will adapt to prosthetics.
A fundraising campaign has already raised more than £500 towards the cost of the prosthetics and adaptations, and Danielle’s colleagues at Tesco, Aberystwyth, hope to raise a lot more.
“Every time someone says they’re going to raise money it makes me cry,” said Danielle.
“It’s overwhelming,” Michael added.
The couple are keen to raise awareness of her condition and would love to hear from anyone else affected by it.
“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,” said Danielle” here.
To donate, visit www.justgiving.com/crowdfunding/freyas-steps