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Bartek is nine years old, he is a very cheerful, polite and friendly young boy. Despite his illness, he loves to play football and spends all his free time on the pitch. Bartek is very dedicated and trains extremely hard at his football club. His determination shines through in his actions on the pitch, and he aims to become a footballer in the future. Football truly gives him a meaning in life.
Bartek was born as a healthy child. However, at the age of 2, while he was swimming he discovered a tumour in his thigh. It was very unusual and there were no signs of an immediate injury. The family doctor ordered an ultrasound which showed no changes in soft tissues. Further on, when he was admission for an X-ray it turned that there were a number of growths located around his knee. This came as a shock for his family. How many growths could there be in such a small body? The orthopaedic, at first diagnosed Bartek with a set of numerous growths. He did not give much explanation and did not outline a clear method for treatment. This, unsurprisingly created an incredible amount of anxiety in his family. Luckily, they found another orthopedist. His recommendations were to remove the growths immediately!
Although, at first this seemed good, it brought even more confusion to family members. Two specialists and two different approaches. It was only the next orthopaedist who explained that Bartek has benign bone cancer, this is a very rare genetic disease. It is characterised by the occurrence of numerous galls across long bones, and its course cannot be fully predicted.
Every day the family live their lives in great fear of the further course of the disease. The family constantly notice more and more new tumours in his young body. Today, he has several dozen of them. They live on a ticking bomb, not knowing what tomorrow will bring them. His genetic studies have shown mutations within the EXT1 gene. This helped diagnose Bartek with multiple osteochondral osteotomy, Hereditary Exostoses MHE. Since then, the family have been desperately looking for ways to treat him.
Today, Bartek has already had 5 operations, two of which concerned the removal of galls. In 2015, he even began to feel pain while climbing the stairs. The tumour on the left thigh was then removed. Already at that time, the problem of his legs shifting was noticed and the family were put in queue for the next treatment. As a result in 2016, they went to the hospital to get his leg straightened. However, a few hours before the operation the doctor stated that it was not that bad, but since we were there the doctor said he would remove the two galls on the tibia bone of the right and left leg. Today, I know that it was a mistake, but then I fully trusted the doctors. Unfortunately, these galls have grown back in the last few months and are now even bigger. The problem of leg cramping has intensified and, unfortunately, it is now progressing quickly. We have been waiting in queue for another operation for a year now.
This disease is closely related to the growth of the body, so its severity occurs during periods of Bartek’s most intense growth. He complains about the pain almost everyday. The problem is, he now, more often needs our help in everyday activities. He can no longer get out of the bath by himself. Difficulties have also appeared with his writing, because the galls on the hands restrict wrist and finger movements. He, most sadly, has issues with cycling and playing football - two of his biggest passions, his true meanings to life. He is getting older and more and more he cannot come to terms with his disease. He always asks us questions, why did this happen to him? Why does he have to undergo frequent operations? He is ashamed of his visible tumours, postoperative scars and the deformities of his body.
Visits from a specialist showed me how limited the knowledge we had about this disease is and misguided by doctors leading family member to feel hopeless. After months of searching, the family were able to get in touch with the Paley Institute from Florida and we visited Dr. Feldman (co-worker of Dr. Paley). This doctor has been researching this disease for years. He is the very best specialist in this field of work. It was only after 7 years that the family received answers to bothering questions, they also found out that this disease is a very serious threat to the joints and you have to take care of them from an early age. According to the doctor, the priority is now to straighten the limbs and surgery is necessary.
Bartek's operation is scheduled for the end of August 2018. Doctors from the Paley Institute will be operating for the first time in Poland. The operation will include peripheral osteotomies of both shins, hemiepifiziodesis of the left femur and removal of the left forearms that limit bone growth.
Finally, after such a long time, Bartek is under the best protection possible. This is a chance for Bartek to have a healthy start in his adult life! The family are convinced that the right decisions of doctors experienced in this field will help Bartek to function normally in the future.
Unfortunately, it is very expensive. The cost of the operation is estimated to be 172,000 PLN (£35,225.80). Although the parents are both professionally active, they are not able to cover all the costs of treatment themselves. To this end, they turn to people with a great heart for help. They believe that together we will be able to fulfil Bartek's dreams and overcome this nasty disease.
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