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Mother is inspired by her brave daughter who had her left leg amputated because of a rare disorder

A mother has told how her brave three-year-old daughter who had her left leg amputated has taught her there is no shame in being different.

Penny Lundin’s parents, of Stockholm, Sweden, were told their baby would have fibular hemimelia at their 20-week scan.

The rare condition, which is estimated to occur in one in 25,000 births, is a partial or total absence of the fibula bone in the calf.

Angelica, 31, and Mikael, 36, made the heartbreaking decision to have their daughter’s left leg amputated because her leg and ankle were too weak to develop or undergo bone lengthening treatments.

But the youngster, who was just 13 months old when she had her leg amputated, has inspired her parents following her life-changing operation.

Three-year-old Penny Lundin, from Stockholm, Sweden, is inspiring thousands on Instagram as her mother, Angelica Lundin said: ‘She has taught me there is no shame in being different’

Penny was born with a birth defect, fibular hemimelia, which is a partial or total absence of the fibula bone in the calf. Her left leg was amputated when she was 13 months old

Penny was born with a birth defect, fibular hemimelia, which is a partial or total absence of the fibula bone in the calf. Her left leg was amputated when she was 13 months old

Mrs Lundin got pregnant with Penny through IVF, but a 20 week scan showed Penny's leg wasn't forming properly. The mother worried her child would live an unhappy life

Mrs Lundin got pregnant with Penny through IVF, but a 20 week scan showed Penny’s leg wasn’t forming properly. The mother worried her child would live an unhappy life

Penny was up and walking just eight weeks after her surgery, and now plays football, takes dance lessons and swims with her prosthetic leg.

Commenting on her daughter’s outlook on life, Mrs Lundin said: ‘I honestly think she gets her positive attitude from her own heart and soul. 

‘She was born a happy kid, we are sure to encourage her to believe in herself every day, but she has taught us more about life than we ever could. 

‘She has taught me not to be ashamed, that being different is a good thing and that positivity comes from a safe environment and a loving family.’ 

When Mr and Mrs Lundin found out they were pregnant through IVF in 2014 they were overjoyed. 

But their joy turned into devastation at their 20-week scan when the couple were told that their daughter’s left leg and foot wasn’t forming correctly.

In December that year, Mrs Lundin gave birth to Penny, and, knowing nothing about fibular hemimelia, initially feared her child would live an unhappy life.

‘I felt devastated at first because I knew nothing about her condition and wasn’t sure if I would ever see her run or even smile,’ said Mrs Lundin.

Children with the condition are born with a short or missing fibula which can also affect other bones in the leg, foot and ankle.   

‘Her [Penny’s] fibula bone was completely missing, and her left foot was very underdeveloped and small with only four toes’, said Mrs Lundin. 

In most cases, it is unknown why the birth defect occurs. But it is thought to be caused by something that happens during the early formation of the limb concerning the activation order of the genes that form the leg.

Treatment of the condition depends on the severity of the case, with amputation for cases where the foot doesn’t form being the recommended option.

Children with the condition are born with a short or missing fibula which can also affect other bones in the leg, foot and ankle. Penny's fibula bone was completely missing, and her left foot was very underdeveloped and small with only four toes. Pictured before her surgery

Children with the condition are born with a short or missing fibula which can also affect other bones in the leg, foot and ankle. Penny’s fibula bone was completely missing, and her left foot was very underdeveloped and small with only four toes. Pictured before her surgery

Penny was walking with a prosthetic leg just eight weeks after her surgery. Pictured recently with one of her doctors 

Penny was walking with a prosthetic leg just eight weeks after her surgery. Pictured recently with one of her doctors 

Parents Angelica, 31 and Mikael Lundin, 36, share their memories with Penny on Instagram to inspire people and other families who have had to cope with amputations 

Parents Angelica, 31 and Mikael Lundin, 36, share their memories with Penny on Instagram to inspire people and other families who have had to cope with amputations 

What is fibular hemimelia? 

Fibular hemimelia is a partial or total absence of the fibula and is the most common form of lower limb deficiency present at birth.

It is estimated to occur in one in 25,000 births.

There are two long bones in lower leg, the thicker one is called the tibia and the thinner one is the fibula. With fibular hemimelia the tibia is shorter than normal and the fibula is missing or underdeveloped.

A leg affected by fibular hemimelia will look shorter than an unaffected leg. The tibia may be bent and the foot may also be smaller than normal, bent outwards at the ankle and may have fewer than five toes. The knee is often also misshapen and may move abnormally.

Males are 50 per cent more likely to be affected than females, and the former Paralympic Oscar Pistorius had the condition.

Most cases of fibular hemimelia are thought to occur for no reason.  

Treatment will depend on the severity of the condition and how normal the foot is.

If the foot is reasonably normal it may be possible to lengthen the leg, and if the foot is twisted outwards to the side it may be possible to correct it sufficiently using surgery.

If the foot is not sufficiently normally formed and the tibia is too short it may be best to amputate it through the ankle.

Prosthetic limbs can be used in almost all cases.   

Source: Steps Charity

After intensive research and consultations with specialist doctors, Mr and Mrs Lundin decided to have Penny’s left leg amputated.  

‘Having Penny’s foot amputated was one of the hardest decisions we ever made at first. But the more I read, and all the families I spoke to made us sure of our decision.

‘We also asked Penny’s team of doctors if bone lengthening would make it possible for her to run in the future without any pain and they told us her case was so severe that they couldn’t promise us that. That’s when we knew we had made the right choice for Penny.

‘Right when she was about to walk she had her amputation. So basically, her condition never had the chance to slow her down.’

Penny’s operation went smoothly, but her parents said it was difficult to watch her daughter in hospital for the first few days.

Being so young, she was unable to communicate how she felt.   

Mrs Lundin said: ‘The first couple of nights at the hospital was rough. She was only thirteen months, so I couldn’t ask her if she was in pain or just bored or tired.

‘It was a bit tricky with the morphine at the start but after just two to three days she was herself again. We continued with just regular paracetamol for about a week.’

But to her parents amazement, Penny’s amputation hardly effected her once she had recovered.

Just eight weeks after her amputation, Penny was walking.

Now, the mother shares her daughters journey on her Instagram page, where her 23,000 followers can see her flourishing. 

Penny can run, swim and dance with her prosthetic leg, which never holds her back

Penny can run, swim and dance with her prosthetic leg, which never holds her back

A cast of Penny's feet prior to amputation. Experts said there would be no surgical options that would help her as her case was so severe

A cast of Penny’s feet prior to amputation. Experts said there would be no surgical options that would help her as her case was so severe

Mrs Lundin now hopes to spread awareness for Penny’s condition and help other parents and families affected by it – saying that Penny inspires her as a human every day.  

‘When we were expecting Penny, we had a very hard time finding anything through social media’, the mother said.

‘My goal is to educate and answer all the questions I get from families in similar situations we were in.

‘I also think it’s very important to show them that what Penny lost in a foot she gained in independence.

Her advice to other families going through the same thing is: ‘Try and learn as much as you can for your own sake but also to be able to answer all the questions from your son/daughter.

‘This is exactly why I want to share Penny’s story with the world and to be able to spread awareness of fibular hemimelia and amputees.’ 

Read more at DailyMail.co.uk


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