By Rebecca Drew
THIS MUM has revealed how her devastation at finding out that her daughter’s rare disorder would lead to the AMPUTATION of her left leg turned into awe for her adorable three-year-old who taught her there’s no shame in being different.
When husband and wife, Angelica and Mikael Lundin (31 and 36 respectively) from Stockholm, Sweden, 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, Angelica gave birth to a beautiful baby girl, Penny, who was born with Fibular hemimelia, a rare condition where children are born with a short or missing fibula which can also affect other bones in the leg, foot and ankle. Penny’s fibula was missing, and her left foot was underdeveloped with just four toes.
Initially, Angelica feared that she would never be able to see her daughter run, play or smile like other children as she knew nothing about the condition. After intensive research and consultations with specialist doctors, Angelica and Mikael decided to have Penny’s left leg amputated at 13-months-old as her leg and ankle were too weak to develop or undergo bone lengthening treatments.
Just eight-weeks after her amputation, Penny was up and walking, and Angelica says that her little girl hasn’t stopped moving since, inspiring her every day to be proud of her differences. When she’s not at nursery, Penny loves playing football, taking dance lessons and swimming with her prosthetic leg.
“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,” explained Angelica.
“At our twenty-week ultrasound we found out that something was wrong with her left leg and foot.
“Penny was born in December 2014 with a condition called Fibular hemimelia. Her fibula bone was completely missing, and her left foot was very underdeveloped and small with only four toes.
“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.”
Fibular hemimelia is a rare condition and occurs in approximately one in 25,000 births. In most cases it is unknown why it 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 best option.
Penny’s operation went smoothly, but Angelica said it was difficult to watch her daughter in hospital for the first few days as she was too young to communicate how she was feeling.
Now, Angelica 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.
“The first couple of nights at the hospital was rough. She was only thirteen-months-old, so I couldn’t ask her if she was in pain or just bored or tired,” said Penny.
“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.
“Right when she was about to walk she had her amputation. So basically, her condition never had the chance to slow her down.
“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.”
Angelica shares her family’s story on Instagram to be an inspiration to other families affected by Fibular hemimelia and amputations – she shared her words of advice.
“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,” she said.
“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.
“When we were expecting Penny, we had a very hard time finding anything through social media.
“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.”
For more information see www.instagram.com/angelicalundin_