Stand up for Sophie – she needs our help to stand up on her own!

Urgent – little Sophie needs an operation as soon as possible! Big hearted  people have already accomplished the impossible – saving our small daughter from disability. Unfortunately, our daughter’s condition is deteriorating. The only hope for Sophie is a complex operation in America, she must go through the next stage of treatment and we are racing against time  and asking for your help to give her a chance to live like other children.

We are Karina and Jakub Biecek, the parents of two wonderful twin girls – Susan and Sophie.  When we learned we were expecting twins we were so happy! But in the 21st week of pregnancy our happiness evaporated as  we were told that one of our daughters would  be born with a rare bone defect, with deformed legs without some bones.  Sadly, the doctor’s  diagnosis was right. Sophie was born  without fibular bones in both her legs. The tibia in both legs are bend. Her thighs and lower legs are deformed with a discrepancy between the length of her legs. Sophie has equinus valgus deformity with a 3-toed right foot and a 2-toed left foot. This rare defect is called bilateral fibular hemimelia and  occurs in only 1 in 250 000 births.

It turned out that without medical treatment Sophie would never be able to walk, she would  only be able to crawl. It was her fate – disability. We searched for a way to help her. We had been told to consider ourselves lucky because a few years ago children with Sophie’s defect had their legs amputated.  Parents of other ill children gave us only one address  - the Paley Institute in USA, where children with the  worst deformity of hands and legs are treated.  The Paley Institute is a clinic established by the pre-eminent orthopaedic surgeon, Dr. Dror Paley. After his treatment the children  are able to walk on their own two legs.

Doctor Paley gave us a 100% chance of success that Sophie would be able to walk like a normal healthy child…. Unfortunately, the cost of treatment in USA was colossal. We had no choice and we asked for help. Due to the support of thousands of wonderful people, acquaintances and strangers, friends and family, we made it – Sophie flew to USA. Dr. Paley corrected her feet, straightened her tibial bones and made dozens of other treatments. Thanks to all these Sophie – 5 years old today – could walk like her sister. It seemed that everything would be fine. Sadly, once again we have to fight for a happy ending.

Again time is against us. Sophie has grown up and needs an operation, much more complex  than before. The bones in her feet have not developed as they should. In one leg the tibial bone has pushed the foot aside. In the second leg the foot “escaped” aside and backwards forming a “boat”. The difference in leg lengths is increasing which leads to the deformation of the whole body of our daughter.  Another operation is needed – corrections to her feet and lengthening of  both her legs. This operation is essential and should be carried out as soon as possible. The defect is worsening every day which scares us deeply.  Without an operation the effects will be irreversible.

We have consulted numerous medical specialists both in Poland and abroad.  There were different opinions but one thing they all agreed on – Sophie’s case is very difficult. None of the doctors (apart from Dr. Paley) have dealt with such a complicated case involving both legs.  Even if we managed to find someone  else ready to carry out treatment, they would be learning how to do it on our daughter.  Even a minor mistake could leave Sophie in the wheelchair.

Dr. Paley sometimes comes to Poland to operate, but Sophie’s treatment needs special medical equipment unavailable in Europe and there is no possibility to import it from America to Poland. Due to the very complicated nature of the operation and intensive rehabilitation required afterwards Sophie should stay in the Paley Institute for about a year. We must turn our lives upside down, leave family, work, friends, home…. Sophie must stand up to fight again. But there is no other option, it is her only chance.

It is not only about raising money for an operation, it is about giving our daughter a normal life, a chance for her to run, walk and play with other children. We have no doubts about the success of the treatment. And we have no doubts about Sophie’s strength and determination – she is incredibly brave. The only obstacle in our way is the cost of the operation fundamental to Sophie’s future.

You have already helped Sophie once before and we are forever thankful. Once again we ask you for help from the bottom of our hearts. Please give Sophie a chance to have a normal childhood. 

Please stand up for her and - if you only can - help us.

Karina i Jakub Biecek – Sophie’s mum and dad