Congenital bilateral lack of tibia
Ends at: 08 October 2018
"Drodzy Darczyńcy dzięki waszej ogromnej pomocy Bartek przeszedł kolejną operację w Paley Institute. Operację przeprowadził dr Dror Paley wraz ze swoim zespołem, podczas której w lewym kolanie zostały wyciągnięte płytki 8plate oraz skorygowany układ kości strzałkowej. Kość strzałkowa została ustawiona prawidłowo w osi kości udowej oraz zderotowana aby stopa była ułożona również prawidłowo. Lewe kolano przed operacją było skrzywione i Bartek miał problemy z chodzeniem. Po operacji kolano jest proste co widać na zdjęciu, a Bartek porusza się bez problemu i bólu kolana.
Jeszcze raz z całego serca w imieniu Bartka dziękujemy Wam za pomoc,
Joanna i Przemysław Bułat "
"Above the knee bilateral amputation would be the best solution for your son"- we heard 6 years ago. "Your son doesn't have tibia bones nor a developed ankle nor knee joints. Prosthetics are the only chance for him to walk in the future. Shock, disbelief and simultaneous slow reconciliation with reality. Bartek's legs, with his birth-weight 1.78 kg, looked grotesquely twisted almost as a frog's and to that distorted feet. The brain said there is no other solution. The heart said to seek for help. Six years later Bartek walks, almost runs, swims and rides a bike. Couple of days after the diagnosis we started to surf the internet for prosthetics and possibilities for Bartek to be independent in the future. At the same time questions where not giving us peace: Why our son? Where's this defect from? Is it hereditary?
"Tibial Hemimelia"- congenital bilateral lack of tibia. The first information on the internet browsers showed cattle and sheep with congenital leg deformations, later a couple of clinical cases of the treatment of children, but resulted with amputation. Zero information about other people with such a defect. This was in 2012. Today when you look up this word, this condition in the internet, photographs of children from Poland before and after treatment will pop up, descriptions of treatment and above all, key "Doctor Dror Paley". Thanks to him ,
Bartek is now a normal child , that is hard to catch up. Bartek has been under the care of Doctor Dror Paley since 2013. He went through a total of 7 operations, but not these moments were the heaviest. It was the time between them. Between the first, second and third operation Bartek's legs were literally covered in metal rods and each of them had a special measure. Every day for 5 long months we adjusted these struts according to the scheme, so that his legs from lopsided and twisted became perfectly straight. It was a very painful process. Additionally open wounds by the rods, pins, cramps at night, where all night baths were the only relief. And all this when he was only 1,5 years old. After 11 months in Florida, including 6 without his father, he returned home full of emotions and tears of happiness.
At Balice Airport, between a crowd of people who were waiting for their luggage Bartek walked towards his Dad pushing his walker with the biggest smile on his face since the beginning of his treatment. After a 2 year break in 2016 we had to return to Florida for the next stage of treatment. Similarly painful, mentally more difficult, because a 4-year old has a lot of questions: "Why does it hurt? " "Mummy don't do ouch to me any more", "Why me? I don't want any more therapy". After seven months of challenges, suffering, pain and also moments of joy, Bartek was able to ride a scooter and to dive in a swimming pool wearing his fixators. In 2017 we got a message that Bartek's legs needed to be corrected, because they were beginning to deform. Thanks to the support of donors, we returned to Florida and Doctor Dror Paley carried out the procedure of inserting an 8plate into Bartek's left knee. We quickly came back home.
This year after sending the x-ray control image to the doctor, we received a message, which we did not expect, but felt it could also be like this. Some time ago Bartek began to limp strongly and his left leg kind of bent. The doctor wrote that the plates did a 150 % job and they need to be taken out around November, but he also needs to repair the bend fibula under the knee. This will require a proper cut of the fibula and placing of the internal screws in a position that makes it impossible for the bone to bend further and to move further towards the knee. Bartek will have to spend in a hospital a couple of days in hospital and about 3-4 weeks in Florida.
Dr Paley saved Bartek's legs and what's most important, constructed Bartek's left knee. He is the only doctor that we trust with regard to any further treatment. We hope that you will help us in our effort to complete our son's treatment. We are most afraid that Bartek's earlier treatment will be wasted if we neglect anything now.
We have told our story more than once. As time passes, it is told differently, without extreme emotion and tears. They have gone and we need to move on. In order for Bartek to move forward with great enthusiasm and interest in the world and take care of his six months old sister, we very much need your help.
We very , very much thank you for the support given.
Asia and Przemek Bułat
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