Meet inspiring Posie, one - still smiling despite losing a leg to rare condition

Posie-Aurora Sadler-Smith has fibular hemimelia. She lives in Great Cornard with her parents Dominic

Posie-Aurora Sadler-Smith has rare disorder fibular hemimelia. She lives in Great Cornard with her parents Dominic Sadler-Smith and Jodie Weeder. - Credit: Sonya Duncan

The mother of a 15-month-old girl with a very rare condition has said they will "not let this define her".

Posie-Aurora Sadler-Smith, known as Posie or Po, from near Sudbury, was born with fibular hemimelia, whereby her bones in her lower limbs did not develop properly.

Problems were picked up when first-time mum Jodie Weeder, 26, went for her 20-week scan, but it would not be possible to find out exactly what the disorder was until her baby was born.

Posie-Aurora Sadler-Smith has fibular hemimelia. She lives in Great Cornard with her parents Dominic

Dominic Sadler-Smith and Jodie Weeder with their daughter Posie-Aurora Sadler-Smith. - Credit: Sonya Duncan

Great Cornard couple Jodie and Dominic Sadler-Smith, 29, a tradesman, could have opted for a termination, but continued with the pregnancy.

Jodie, who has a cleaning business, said: "When I was pregnant with her I didn't know what was wrong with her or even if she would survive.


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"She was always moving in me and wouldn't stop. Her brain was okay and her heart was okay, just in the middle.

"There you go! I'm not giving up on her because she's not giving up on herself."

Posie as a newborn. Abnormalities were detected at Jodie's 20-week scan.

Posie as a newborn. Abnormalities were detected at Jodie's 20-week scan. - Credit: Jodie Weeder

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Posie's left leg hadn't developed properly and she only had four toes on her left foot, and her right leg had no bones from below the knee and a very deformed foot with only three toes.

Fibular hemimelia only usually only affects one side, but in Posie's case it was both her lower limbs.

Jodie said some medics hadn't even come across the condition.

Posie has two prosthetics, one for each leg.

Posie has two prosthetics, one for each leg. - Credit: Sonya Duncan

The chances of having fibular hemimelia are estimated at about 1 in 50,000, but this is for cases involving one leg.

Jodie said: "It could have been a lot worse, there are always worse illnesses. My Po is happy and she's a bright child.

"We are not going to let this define her and [people] put her down and write her off before they have met her.

"We will show people no matter what is in your life, whatever hurdles are in your way, you can do it."

Dominic Sadler-Smith and Jodie Weeder want to raise awareness of the condition fibular hemimelia

Dominic Sadler-Smith and Jodie Weeder want to raise awareness of the condition fibular hemimelia and funds for the hospital that cares for Posie, the Royal National Orthopaedic Hospital. - Credit: Sonya Duncan

Just after her first birthday, Posie had surgery on her left leg in July this year, an amputation from her ankle that has left her with a stump.

Jodie said she was down in surgery for 2.5 hours, which was an "absolutely horrendous" time.

But she added: "She woke up from her surgery smiling and waving at the doctors."

Jodie said the "hardest part" was the recovery.

"Her leg was bandaged up. Keeping that on a one-year-old was impossible. I looked at the stump and I just cried," she said.

She added: "Even though it's just a foot, we miss that foot. Her little toes were perfect to us."

Posie had surgery just after her first birthday and also had to wear a hip brace at six months old.

Posie had surgery just after her first birthday and also had to wear a hip brace at six months old. - Credit: Jodie Weeder

Posie got her prosthetics in the past couple of weeks; she has one for each leg.

"She's taken to the left one that was amputated better," said Jodie. "The other one is a bit uncomfortable for her because it holds her foot in it as well. That foot is very deformed."

She recently had shoes fitted for her prosthetics at Clarks in Sudbury, and Jodie said the girls there "were amazing".

Jodie said: "Po is such an inspiring little girl. She doesn't let anything stop her, she never has. She's just incredible.

"She's a little angel and she was sent to us for a reason - I honestly believe that."

She added: "Everyone who meets her falls in love with her."

Posie's family have said her condition '"won't stop her" in life.

Posie's family have said her condition '"won't stop her" in life. - Credit: Sonya Duncan

She described her child as an "extremely clever" little girl who loves puzzles, putting shapes in boxes and music.

Posie has the same condition as South African former professional sprinter Oscar Pistorius, who competed in both the Paralympic Games and Olympic Games.

Jodie said the Paralympics gave hope for Posie, adding she wants her to make her own decisions in life, and she can be whatever she wants to be.

"Just because she's a little bit different it won't stop her," she said.

Posie is under the care of the Royal National Orthopaedic Hospital at Stanmore, Middlesex.

At an appointment in October the family are due to find out more about whether her right leg will need amputating, possibly as early as before Christmas.

There are concerns about whether her right leg can support her weight.

Jodie described their journey as "a rollercoaster".

"People have always said 'this is the worst case scenario' and we have always had the worst. We have never had the easy option.

"We do it as a team and that's the only way you can do it. It has been hard."

The family want to raise awareness of fibular hemimelia, adding it can be very isolating to have a child with a rare condition.

They are planning to walk 100 miles for the Royal National Orthopaedic Hospital charity, aiming to finish on December 1 at the Stanmore site.

Posie's prosthetics will need to be changed every six months, and the expense that is going into her care from the NHS is one of the reasons the family want to give back.

A fundraising link will follow in a future article.

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