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.
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?
We would like to thank our family, friends, colleagues and all donors for help and support. Thank you that you are with us from the very beginning and give us a lot of strength. Thanks to you we believe that Kubuś will be a happy and independent boy in the future.
- We would like to thank Paweł Król (www.studio-ex.pl) for making the website for Kubuś.
- Special thanks to the CollTra (www.colltra.pl) company for the website translation into German and English.
- Sincere thanks to Sandra Plewko, the originator of the charity calendar action.
- Thanks to the City of Gliwice for organising the fund-raising for Kubuś during the match.
- We would like to thank the PKO Bank Polski Foundation for organising a half marathon in Rybnik for Kubuś, and all the runners who took part in the race, thanks to whom the Foundation donated PLN 20,000 to the Kubuś account.
- Thanks to “Stary Hangar” for the Squash Tournament and Fitness Marathon, during which the fund-raising for our son’s treatment was organised.
Fundacja Dzieciom "Zdążyć z Pomocą"
ul. Łomiańska 5, 01-685 Warszawa
tel. +48 22 833 88 88
My dream is to be able to walk in the future on both legs. I will have the Ilizarov apparatus attached to my leg approx. 4-5 times. Each fixator costs PLN 20,000. There are also the costs of commuting from Gliwice to Poznań and the costs of rehabilitation. At present, we don’t know yet what will be the costs of hand surgery. The doctors first need to say if there is any chance of improvement.
Unfortunately, the surgeries are very expensive, so I am counting on you to help raise the entire amount for my treatment.
If you would like to help, you can donate to my account at any time. Information can be found below.
Alior Bank S.A.:
IBAN: PL42 2490 0005 0000 4600 7549 3994
SWIFT (BIC) Code: ALBPPLPW
Transfer title: 21070 Stępień Jakub - darowizna na pomoc i ochronę zdrowia
(donation for help and health care)
Thank you all for your help.
2014 Charity Calendar
All proceeds from the sale of the calendar will contribute to the treatment and rehabilitation of Antosia and Kubuś.
Jakub Denys - 2014 Charity Calendar is a charity project. It is about raising funds for the treatment and further health care for children in need. The proceeds from the sale of the calendar will be divided between Antosia Wieczorek and Jakub Denys. The funds will help to pay for the surgeries of both children, which will enable them to walk and assure their mobility. They will save Antosia’s both legs from amputation, and Kubuś will be able to make his first independent steps.
Top Polish models took part in the 2014 Calendar session, among them: Anita Sikorska, Kinga Waszak, Ewelina Obszańska, Marta Gut, Sylwia Nowak, Zuzanna Chyba, Ola Brunath, Katarzyna Kordaczuk, Agata Witkowska, Zhanna Ratajczak, Monika Pietrasińska and Kasia Danysz. It is through their involvement and their great heart for the support of the entire fund-raising to help children that the campaign and activities were largely successful. And the calendar itself gained immense popularity and success among Poles wanting to help.
The apparatus is most commonly used in the correction of axial disorders and limb lengthening, but also in the treatment of feet distortions (e.g. clubfoot), achondroplasia (dwarfism), trauma (e.g. severe fractures), joint contractures (congenital or acquired), false joints, palsy deformities, complementing bone defects after tumour resection.
Kubuś underwent his first surgery on 29 September 2014 in Poznań. The surgery was carried out by doctor Shadi. He had a reconstruction of the lateral malleolus, positioning of the foot and straightening of the tibia. The surgery cost PLN 9,000. There was a long queue for the surgery in the National Health Fund (NFZ) hospital, so we opted for private treatment, because the surgery had to be done between 12 and 24 months of age.
Kubuś will undergo further surgeries, if there are no complications, when he is 3 years old. He will have the Ilizarov apparatus attached to lengthen the tibia and correct the valgum knee. At the moment, the leg is 10 cm shorter and Kubuś cannot walk on both legs. He is learning to walk on a custom-made brace produced by an orthopaedic company. The lengthening of the leg will be carried out every 3 years until the end of the growth period, that is approx. 17 years of age. One Ilizarov apparatus costs PLN 20,000. Kubuś could have the surgery at the National Health Fund hospital not earlier than in 2020, therefore we are raising funds for our son’s treatment at a private facility.
Kubuś has a long-term treatment and life-long rehabilitation ahead of him, therefore we would like to ask for your help to raise funds for our son’s treatment. Thank you.
Hemimelia – a birth defect involving a unilateral or bilateral underdevelopment of the distal portion of the upper or lower limb. The defected bone can be shortened or completely undeveloped (aplasia). There are two types of hemimelia – transverse and longitudinal.
Transverse hemimelia is a congenital absence of a portion of a limb (as opposed to amelia, in which the entire limb is absent). It is clinically similar to a state after amputation (hence it is sometimes called “congenital amputation”). Longitudinal hemimelia is a partial absence of one of the components of a limb in the longitudinal axis (in phocomelia there is a complete lack of a portion of a limb). It is simply an underdevelopment and shortening of the bone building the limb.
The defect most commonly involves the following bones:
- fibula - fibular hemimelia
- tibia - tibial hemimelia
- radius - radial hemimelia
- ulna - ulnar hemimelia.