The greatest love. The blackest fear. These words describe what it is like to be a parent. And terrifying helplessness in the face of one situation – the illness of your own child. This is what can break you and draw you into a bottomless pit of despair.
We are Karina and Jakub Biecek, the parents of two wonderful little girls. The birth of Zuzia and Zosia was the beginning of the most wonderful adventure in our lives – becoming a mum and dad. It was also the beginning of our fight because our daughter, Zosia, was born with a birth defect, occurring in only 1 in 250 000 births, called bilateral fibular hemimelia. Her legs are completely deformed, she will not be able to stand up on her own. The only hope is a highly complex operation at the Paley Institute in Florida, USA. But to give Zosia this chance we need your help. This is why we are here today to tell you Zosia’s story and to ask you to stand up and fight with us to help our daughter. We will do everything to start Zosia’s treatment, because our daughters are all our world, our whole life, our everything…
It started with a USG. The happiness that we felt then and we are feeling now gives us the strength and power to fight. During this USG we were told we were expecting twins. Together with the beating of these two tiny hearts, our happiness doubled in a magical way.
We had lots of dreams about our two soon-to-be-born little girls. All parents have dreams, don’t they? We heard their laughter and the patter of their little feet. We imagined them jumping on our bed in the morning, and going to school with plaited hair, carrying their school bags. We never thought that it could be any different. We never thought that instead of the patter of two pairs of tiny feet it would be only one because Zosia’s legs are so deformed that without proper treatment she will be disabled for life.
In the 21st week of pregnancy we were told that Zosia wasn’t developing normally.
It was not a precise diagnosis. There was not a treatment plan. Only one thing was certain – that Zosia would be born with a series of defects to her pelvic limbs, her legs would be deformed, some bones wouldn’t be there. We had to wait until the moment of birth when the doctors would be able to make an accurate diagnosis and treatment plan. We had to live with the fact that we would be the mum and dad of an ill child. We were devastated. Pregnancy should be a time of happy expectations, of making plans and of hope. There should be no place for tears spilt over the medical literature in which we were trying to find answers on how to help our unborn daughter.
The girls were born on 8 December 2016, Zosia two minutes after Zuzia. It was the most beautiful day in our life.
On internet we have seen thousands of photos of deformed legs, of small feet, thinking we were ready for everything… But we were not. Whoever leans over our twins, always reacts in the same way, at first a smile when they see their big blue eyes and blond hair, and then shock and dismay when they see Zosia’s feet so different from those of her sister.
Zosia was born without fibular bones in both her legs. They just did not form. The tibia in both legs are bend. Her thighs and lower legs are deformed with a discrepancy between the length of her legs. Zosia has equinus valgus deformity with a 3-toed right foot and a 2-toed left foot. Without medical treatment she will not be able to walk, she will be only able to crawl. She will never be able to move unassisted. We truly believe that proper medical treatment can change Zosia’s fate because such a defect is treatable. We have been searching for a way to help her.
We have visited numerous medical specialists: orthopaedic surgeons, physiotherapists, occupational therapists, and orthopedic technologists. We are searching for someone who can help our daughter. We have been told to consider ourselves lucky because a few years ago in Poland children with Zosia’s defect had their legs amputated. Now, very slowly, things are changing and there is a chance of treatment. We went to Poznan where we received a referral for an operation for feet equalization and for tibia straightening, with a recommendation that surgery should take place between the age of 18 and 24 months. This is the ideal age to start treatment as it offers the highest chance of success. But the scheduled operation date given by the hospital in Poznan is 22.07.2019, which is one year too late. There’s a waiting list and over 1650 people are in front of Zosia.
We started to search for help outside Poland. And we found out that Zosia could be treated, that there is hospital which offers almost a 100% chance of success! Zosia will be able to walk and will be able to live like a normal healthy child! This is the Paley Institute: a clinic established by the pre-eminent orthopaedic surgeon, Dr. Dror Paley. The Paley Institute is a world-renowned pediatric orthopedic centre in West Palm Beach, Florida, which offers patients the most technologically advanced limb lengthening and deformity correction surgeries available. Dr. Paley has developed more than 100 new operative procedures for bone and soft tissue reconstruction of congenital, developmental, and post-traumatic limb disorders. Dr. Paley’s treatment philosophy centers on reconstruction: lengthening and straightening deformed bones and reconstructing congenitally short limbs to avoid amputation, a frequently recommended alternative. Dr. Paley’s advances in the treatment of congenital deformities have given children who would have otherwise lost their legs, excellent function without the need for prosthesis. Furthermore, Dr. Paley has reclassified many of these deformities, with an emphasis on reconstruction treatment rather than amputation.
Children, treated by Dr. Paley, can stand up on their own, walk, run and function normally!
In May of 2017, when Dr. Paley was in Skierniewice, Poland, we managed to arrange a consultation on Zosia’s deformities with him personally. We learnt that Zosia’s leg defects are not typical and that the treatment entails not only a SUPERankle procedure, which allows equalization of the limb length and correction of the deformity, but also extra procedures. Her left leg needs bone morphogenic protein (BMP) inserted into the cartilage of the tibia and talus. This must be done to avoid a recurrence of deformities, which would mean successive operations. If Zosia was operated on at the any other medical centre, they would not have the medical procedures to stabilise her left foot, which could undergo fractures.
Now we know that Zosia’s deformity is too complicated to be treated anywhere else other than at the Paley Institute. This is the place with the highest standards of fibular hemimelia treatment with the huge expertise and experience. But the estimated cost of the operation is extremely high – over $160 000 US dollars! This is the price we have to pay if we want our daughter to be able to walk and live like a normal child! Only the Atlantic Ocean and that amount of money separate us from making our dreams come true…….
The fight for the health of our daughter is a fight against time. Zosia will be 18 months old in June 2018, her second birthday will be in December of that year, and we must raise the money for the operation by then. Time is running out very fast. If we do not make it, she loses her chance. We cannot even imagine such a situation. How to explain to her that her sister can walk and she can’t? How to explain that mum and dad let her down because we could not raise the money for operation? We know that we are not alone, that there are people with huge hearts in Poland and in Polish communities all over the world. We strongly believe that you will stand up for Zosia and that with your help she will have a chance to stand up on her own.
You can help Zosia find her own path to a normal life, which she will follow wisely - because Zofia means “wisdom”.
We beg you to join us in our fight. Our daughter needs you so badly…
