Mum hails 'inspirational' daughter born with fibular hemimelia

As a first-time mum-to-be, there were nerves, curiosity and a real sense of excitement ahead of her life being about to change forever with the arrival of young Posie-Aurora.

What she couldn’t have predicted, however, is just what the doctors would say to her.

“They told me they couldn’t see the bones in Posie’s legs and I should come back the next day to see a consultant,” said the 26-year-old from Colchester, now living in Great Cornard.

“I didn’t ever think anything was wrong, just perhaps she was in an awkward position.

“It turns out she was missing loads of bones below her knees and had deformed feet; her little toe and fourth toe were stuck together.

“They didn’t really know what to say, so we had various appointments before being referred to the Royal Orthopaedic Hospital in Stanmore.

“By then I was about six to seven months pregnant and was told we wouldn’t know what Posie’s condition was until she was born.

Family - Jodie Weeder and Dominic Sadler-Smith with Posie

“The doctor in Colchester said they don’t know if she will deteriorate or even survive. It was horrible, I couldn’t enjoy things a normal first-time mum would.

“We held on to every little movement and felt so relieved when we could feel her shuffling inside.”

Upon being born, Posie, now one year old, was given a diagnosis of fibular hemimelia, an extremely rare condition which impacts one in 50,000 babies.

Children who have this condition are born with a short or missing fibula, while other bones in the leg, ankle and foot can be affected too.

Former South Africa paralympian Oscar Pistorious is a well-known sufferer of the rare diagnosis.

Most children with fibular hemimelia have it in one leg, but Posie, however, had it in both.

She was deemed too deformed to have her legs lengthened, with no ankle and only one bone in her left leg.

After heart-wrenching discussions with the doctors, it was decided part of her leg needed to be amputated aged just one year old.

In a cruel twist, despite being given her first set of prosthetics last Tuesday, Jodie explained it’s “not working out too well,” and her right leg could need amputation too.

Posie’s journey has also meant Jodie has had to reduce her hours at her own cleaning company to just one day a week while her tradesman partner Dominic continues to work.

All of this hasn’t got their beloved daughter down though, not for one second.

“She loves to dance,” Jodie added, “put the radio on and she will be dancing around, she loves music.

“She amazed doctors when she learnt to walk on her knees which was just incredible - it shouldn’t have been possible.

“Posie may do it a little slower than others, but she hits every milestone she takes on and the doctors were so happy to see how well she overcomes her hurdles.

“Our girl inspires me and her dad every single day. You take life for granted, but seeing someone doing things she’s not supposed to be able to do is incredible.”

Now the family want to give back to the “phenomenal” Royal Orthopaedic Hospital, which has supported them through the lowest of lows.

“We want to raise money for the hospital as a way of saying thank you, but also to raise awareness of the condition,” said Jodie. “I’ve met doctors who don’t even know about it and I’ve had to sit and tell them what it is - I get a bit nervous I might say the wrong thing.

“We’re hoping to walk 100 miles during the weekends from October until December.

“This hospital has given my baby a lifeline and opportunities no-one ever thought would be possible.

“Her surgeon is like her fairy godmother. She was the support when I needed it and I trust her with everything.”

Details of the walk and its fundraiser will be shared with the Gazette once launched.