My name is Kubuś. I was born on 12 February 2013 in the Specialist Hospital No. 2 in Bytom. In the fourth day of my life I was taken to the Upper Silesian John Paul II Child Health Centre in Katowice for further diagnostics. When I was still in my mummy’s belly my parents learned about my defects. The doctors from Ruda Śląska carried out a special test.

After I was born, it took 20 days of tests before the doctors made the diagnosis. I was born with fibular hemimelia (the congenital absence of the fibula). My right leg is shorter than the left one. It is missing the fibula bone. The tibia bone is shorter and bent. My foot is also not as it should be. It is in the wrong position and has only 3 toes and no ankle. 

I also have a problem with my left hand. It has 3 fingers, of which two are fused together. My forefinger is split with the thumb. As if that was not enough, the neurologist diagnosed increased asymmetrical muscle tone in the limbs. I require constant rehabilitation and once a week I undergo the NDT-Bobath method rehabilitation.

Aparat Ilizarova - Jakub Denys

After numerous visits to various specialists in the field of orthopaedics we found doctor Shadi who wanted to treat my foot. On 29 September, I underwent my first surgery. The doctor straightened my tibia and positioned my foot at the right angle. I had my leg in a plaster cast for three months.

In April 2016, I will have further expensive and painful surgery involving the lengthening of my leg by a special Ilizarov apparatus. I will wear it for about 6-7 months and it will lengthen my leg by approx. 6 cm.

Unfortunately, I will have to undergo this treatment every 3 years until the end of the growth period, that is until I am about 17 years old. At present, my leg is about 10 cm shorter than the healthy one, which makes moving difficult. However, until then I will be learning to walk on a special brace made for me by the orthotician.

 

In August, we are going to Hamburg for consultations at the hand surgery clinic where the doctors will tell us how to improve my hand so that I could grab things, because at the moment I can’t.

I’ve got a long and painful treatment ahead of me, but I believe that one day I will be able to walk and run like other children.

I also believe that thanks to you, people with good hearts, I will raise enough funds for the surgeries and that in the future I will be able to stand on both my legs without anyone’s help.

You can help me in many ways. Detailed information can be found in section: How You Can Help?

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Foundation for childeren “Zdążyć z Pomocą”

Fundacja Dzieciom Zdążyć z PomocąFundacja Dzieciom “Zdążyć z Pomocą”
ul. Łomiańska 5, 01-685 Warszawa

Alior Bank S.A.:
42 2490 0005 0000 4600 7549 3994

In payment title please write:
21070 - Stępień Jakub - darowizna na pomoc i ochronę zdrowia.
(donation for help and health care)

A FEW WORDS ABOUT ME AND MY DISEASE

Jakub Denys - Kilka słów o mnie i mojej chorobie

My name is Kubuś. I was born in 2013 with a rare congenital defects syndrome - fibular hemimelia and undeveloped left hand.

I dream that one day I will be able to walk, run, ride a bike and enjoy life like other children.

I just want to be independent. It will be impossible without your help.

Thank you all for your help.