27 January 2015

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Category: Strony (EN)

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?

27 January 2015

Thanks

Category: Strony (EN)

Jakub Denys - Podziękowania

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.
27 January 2015

How you can help?

Category: Strony (EN)

Fundacja Dzieciom Zdążyć z Pomocą

I am a charge of the Foundation for Children “Zdążyć z Pomocą” (“Help on Time”)

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.

 

International transfers:

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.

27 January 2015

Media

Category: Strony (EN)

2014 Charity Calendar

All proceeds from the sale of the calendar will contribute to the treatment and rehabilitation of Antosia and Kubuś.


Jakub Denys - Kalendarz Charytatywny 2014Jakub 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.

Jakub Denys - Kalendarz Charytatywny 2014

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.

 

source: www.infogliwice.pl

27 January 2015

Ilizarov Apparatus

Category: Information (EN)

Gawrilł IlizarowGavril Ilizarov was the inventor of the Ilizarov apparatus. He began his education in medical school in Dagestan, and then he entered the Crimean Medical Institute. After the Nazi attack on the Soviet Union the institute was evacuated to Kazakhstan where Gavril completed his medical studies. After finishing the school he became a doctor in the Kurgan region in Siberia.

Although he was not a surgeon, but a regional doctor, he treated war injuries, which were numerous in this period. He specialised in bone deformities and disorders of bone union. Ilizarov invented the distraction osteogenesis.

How does it work?

Distraction osteogenesis is a surgical procedure used to lengthen the bone. This is done by cutting (fracturing) the bone without compromising the continuity of the periosteum, and then the two bone ends are gradually moved apart by means of a special frame. The pace of stretching depends on the individual course of treatment (up to 1 mm per day).

Tissue regeneration is used, which commonly occurs in the body during the formation of periosteum scar after fracture. A regenerate, as Ilizarov called the tissue forming at the stretch place, has the same structure as natural tissue.

Muscles, nerves and blood vessels stretch evenly with the bone and adjust to the new shape of the body.

For the proper conduct of the process several conditions need to be met, including suitable technique, osteotomy in the right place (bone cutting or fracture) and stable connection of bone fragments with the stabiliser, as well as a normal period of delay of distraction and an appropriate pace of the treatment.

Ilizarov apparatus

The stabiliser was created in 1950 (introduced for use in 1951). Initially, the idea of this treatment method was subjected to severe criticism, and ultimately rejected, thus it was used only in traumatology. But when a few years later Ilizarov became the head of the surgical ward in the Kurgan hospital and his work began to be a matter of interest, this innovative treatment technique was appreciated and its use was initiated in reconstructive surgery and orthopaedics on a wider scale.

Aparat Ilizarowa

The Ilizarov apparatus is a medical device that is used to merge the bone (broken or cut). Rods (Kirschner wires, Schanz screws) are fixed to the bone to stabilise the bone fractions. On the outside the rods are connected with rings (sometimes half rings), which in turn are connected to each other with telescopic wires. Stabilisers of this type are known as distractors.

The apparatus has a spatial structure (tripartite – made of half rings or rings). It is mainly used for complex deformities due to the possibility of adapting the fixator to any deformation of the body and rebuilding or developing in any way at any time during treatment. Its disadvantage is that it is less comfortable than a single-level apparatus (frames and braces, e.g. Orthofix). Over the years, attempts were made to combine the stability and multi-tasking features of the spatial apparatus with the simplicity of these single-level stabilisers, hence the development of the so-called hybrid structures.

The Ilizarov apparatus is being constantly modernised. It is now the most commonly used technique of limb lengthening.

 

Stages of treatment

Attaching the apparatus is just the beginning. The rest of the treatment largely involves rehabilitation, thanks to which the patient can maintain good physical fitness, which leads to full use of the limb. After the surgery (approx. 7 days) begins the first stage of treatment, i.e. slow stretching of the bone by increasing the space between two rings.

Phase I – Distraction period

The most common Ilizarov treatment regimen is bone distraction of 1 mm per day – which gives 0.25 mm every 6 h. With this solution we use the regenerative abilities of tissue to the maximum extent without damaging the nerves, muscles, blood vessels and joints. This is the main, but also the hardest and least pleasant stage of treatment, because it reveals many problems associated with tissue tension. The duration of this period depends on the type of dysfunction and the rate of bone lengthening or shifting, which increases with the length of the treatment. The regenerate tissue reconstruction process begins after the completion of the distraction process.

Stage II – Consolidation period

It involves wearing the apparatus while maintaining the function of the limb. It is usually several times longer than the stretching period and it completely depends on the ability of the body to heal. Therefore, in the case of children, this period is shorter, as the body of a child has the ability to regenerate faster.

After removing the apparatus the patient begins rehabilitation of the limb to improve his/her mobility. This is when the final reconstruction of the regenerate takes place.

Use of the apparatus

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.

sorce:  www.aparatilizarowa.pl

26 January 2015

Fibular Hemimelia

Category: Information (EN)

fibular hemimelia

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.

 

source: wikipedia

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.