The story of Ivan Bradnansky

Ivan Brádňanský a rodina

Ivan (Ivko) was born 4.9.1991 in Poprad. Since than he has muscle dystrophy of Duchenne type, which was diagnosed when he was 4 years old. Doctors told us he will stop walking and eventually he will end with breathing device. It was hard to believe that. He could walk till his 10th birthday but then he was reliant upon wheelchair. Now it is three years since he is continuously connected with breathing device. With help of an assistant he was able to finish primary school at art school in Kežmarok., which was the only one allowing him to study with his disability. He learnt to draw very nice even with his limited hands movement. After that he could finish first year at University in Ružomberok city, where he learnt English. Unfortunately, we had to pause and after two years completely stop his studies because of degradation of his health condition. Since his 20th birthday he is at home. He could draw at home. His paintings were presented on exhibitions in Žilina, Levice and Košice which were held by Association of disabled people. His paintings were also present in project “Building up bridges” for two years. Those drawings were also presented in exhibition centre Incheba in Bratislava and sold there by auction.

Till December last year he could intensively work on PC. His drawings, saved in computer, were printed and gave out for pleasure of others, who came to visit him. He also translates 365 Gods names with verse from Bible from English language. He printed them and gave out also. He likes to hear Christian songs, because he loves Lord Jesus. He empowers him, bringing him joy and optimism. Now after a week-long therapy process, he is weakened and tired. We hope his condition will improve again so he can continue with normal activities as before.

Ivan's paintings

Ivan Bradňanský - maľba motorka
Ivan Bradňanský - maľba traktor
Ivan Bradňanský - maľba kone
Ivan Bradňanský - maľba dieťaťa

Ivan painted a number of paintings. If you are interested in his work, write to us.

The story of Alexandra Ester Baloghova

I was born on 28.01.2011 after full 9 months by Caesarean operation with weight 3380g. My hometown is Kráľovský Chlmec. The joy of my parents was huge, I grew fast. After three months I was vaccinated, and I felt good but afterwards I realised I cannot hold my head up and straight. After regular physician check nothing was determined and that cool us down. I did well and I grew a little again, but I had troubles with moving. Later issues with breathing occurred – I inhaled by belly not by lungs.

Children neurology doctor in April 2011 determined a diagnosis: SMA type I (Werdnig-Hoffmann).

They advised us rehabilitation centre of children faculty hospital in Košice, where we underwent rehabilitation twice a week until 25.01.2012. Huge progress was made in my movement abilities, I started to move with toes and foots and could hold a toy in my hand. We were pleased but not for long, I had high temperatures, started to dribble and stopped eating. At first, I though it relates to teeth growing. It lasted for two long weeks, but the conditions did not improve. It got worse, I started to choke and blacked out. My parents started with resuscitation and called an ambulance which took me to the hospital, where I was for three days but eventually, I had to be connected to the breathing machines in children faculty hospital in Košice. One week I was in coma and then I had to undergo tracheotomy. Finally, I am at home.

2012

This year was hard for us. Good times take turns into bad ones. Happy moments into sad. Our main goal was to create appropriate conditions to take care of our child at home with minimum doctors monitoring. That meant buying many devices, tools and expendable supplies. To that we needed help, which we received thanks to you. We managed to create good conditions for Alexandra and now the only thing left is to hope and not give up.

2013

With great pleasure we announce you celebrating of Alexandras’s second birthday 28.1. Our success, negligible for some but huge for us and our child, is that our Alexa can breathe without devices for 2-3 hours continuously. Since even now the cure for this rare disease doesn’t exist, her life is just in God’s hands.

2014

This year went fast. We founded a non-profit organization. Daughter grew up and we had many happy and a few sad moments. We bought a tool MOTOMED, which is used for exercise limbs. We also underwent rehabilitation near Zemplínska Šírava at hotel Chemes.

2. season 2018 – summary

A week before Easter, a little less than 300 runners met in the Svit to support three individuals with severe muscular disease. Specifically, 3-year-old Maria Kubova from Vikartovce, 19-year-old Darius Renner from Prešov and 22-year-old Radovan Zmij from Trebišov.

The charity run was supported by many companies, individuals, local authorities, but also more than 30 volunteers, thanks to whom we were able to collect € 4038. The funds were redistributed to Maria for a rehab, Darius for a shower bed and Radovan for a positioning bed. We would like to thank all participating volunteer, runners and sponsors for the support, especially the ČSOB Foundation and the Slovak Children’s Foundation in cooperation with the Dôvera insurance company. We appreciate it and thank you very much!

ALS BEH 2018

The start was scheduled for 9AM, and after less than an hour and 37 minutes, we already had a winner – Patrik Milata (1988) from Elite team OCRA and 4 minutes later his younger brother Paskal (1993). The third with 1:42:10 was always young Julius Kaľavský (1976) from All4Run Margecany. The winner of the 50-year-old category, Emil Mlynárčik (1960) from Hôrka finished in the perfect eighth place and we only waited for the first woman 1 hour and 57 minutes from the start. It was Michaela Kucharikova (1992) from AC Kriváň Liptovský Mikuláš, who took the 19th overall. From local runners we would highlight the performance of Jana Perinajová, who ranked 2nd in the category over 40 years, Marek Kačmarčík – 3rd place in the category above 40, Danica Božová, who won her category over 50 years and Vladimir Zima – 3rd place above 60 years.

The youngest participant was 18 and the oldest 72 years. Only 42 runners (14%) aged 18-29 were involved in the run, which tells us internally that it is a very small number. We hope, therefore, that thanks to our this year premiere of “Children’s run”, we will teach young generation for love to sport.

ALS BEH 2018 - vrchnaciky

The weather was beautiful on Saturday, but the coat of snow in the woods also did for seasoned runners. The steep slopes were icy here and there and technically very demanding – something the organizers had repeatedly warned about – but one unrestrained movement was enough to fall and to injure. On a difficult terrain, a runner from Bratislava fell and unfortunately had to be hospitalized by a helicopter due to a wide lacerated knee injury. Fortunately, everything ended up well, and in the assessment he was already in the arena’s premises and with a smile on his face told us: “Next year again!”

Traditionally, the runners were asked to bring as many plastic bottle caps as possible for registrationfor the little Sabinka. The fact that the runners took the responsibility was shown by triple increase in numbers over the last year. We picked up over 200kg of caps! We are extremely fond of the runners’ interest to help in this way too. You can also join all year round! Even with this symbolic activity, great things can be done, as evidenced by more than 56 tons of gathered caps = circa 11,660 € that Sabina’s parents were able to use for treatment.

So the run is over. What now? Rest? Definitely not! Now is the season of our “garbage collection”. You will learn more about the time and place of organizing the closest garbage collection in the sub-page “Scrap collection”. We kindly invite you all to do something extra for our city and the surrounding countryside.
We wish you a beautiful spring and even more beautiful summer full of sports activities with your family and your friends!

Greetings, Športuj srdcom o.z.

ALS BEH 2018 - detské behy

Second year as seen by Jakub Gurka

Hello friends,

At my FB site or Instagram you may have noticed that I invited you to a great event, which is a charity run called “Ján Svočák Memorial” or “ALS BEH”. This was already the second year, and the motto of the run is: “We are breathing and helping the ones whose own muscles have left them.” Race is aimed at helping people suffering from ALS, a type of muscular atrophy involving the loss of central nervous system (brain and spinal motoneuron) cells that control the consciousness muscular movements. The patient cannot control his movements and gradually dull all his muscles in the body. However, the brain continues to work, and in full consciousness of mental abilities, the patient remains paralyzed. The most notable person suffering from this disease was Stephen Hawking, the genius who recently left us. Run is also a reminder of the organizer’s father, who was a passionate athlete and also suffered from this disease. This year, thanks to the race, three young people were helped by the same amount of money, which was collected from start-ups, sponsorship donations, on-site contributions, and a collection of plastic bottle tops.

I participated in this event last year and therefore I did not hesitate this year.

Jakub Gurka

We went to race with Lenka, but I was the only one running since it is a cross half marathon, which is a rather demanding discipline. Already on Friday we went to my parents in Podolín, from where we were closer to the race. Mommy prepared a great dinner, but we could not finish it because of the already full stomach … sorry mom 😀

We woke up around 6:20 on Saturday, had breakfast and drove to Svit where the start was located. Race started at 9 o’clock but registration and start-number pick-up was possible until 8:30. My number this year was 236, which I attached to my shirt, which I currently wear on every run. Registration was quick, without any problems. Before the start, I have also handed out 12 prizes from www.ostoreshop.sk, which I created for the ODLO sports shop where I work alongside the trainers activities, which became one of the sponsors of the event. Since we had a car heated and outdoor was a little bit cold, I started preparing myself and Lenka was warming up in a car. Before that, I went to hand out the collected plastic caps that I got. Of course my plastic bag tore apart and I had to pick up the caps again. During picking up one of the racers made fun of me asking if I am gathering the last ones from the ground quickly and Lenka had fun from me in the car – not really willing to help me 😀 . We started at 9 am.

Compared with the previous year the track was the same but in opposite direction what we already knew. So we also knew that there will be a lot of hill at the beginning, then more or less straight ground. That’s why I was not in hurry at all.

The first hill was also known from the Spartan Race, which was held there two years ago. I already stood up at the start with my thighs and bumps hurting what was the result of a quarter training … I did not expect that. The hills went well, for a bit of unscratched calves it was a challenge, but they recovered very fast. The downhill went also well, despite the slippery surface, I managed them quickly. Maybe I should have slow down a bit, because the second half of the race was hard for me. At the first refreshment, I was quite pleased that I was breathing, drawing up the strength of brutal wide refreshment choices and water. I took a banana, an orange I had been looking forward to since the start, raisins, magnesium and passed on.

The second half as I said was very difficult, the energy was low, the result of exhaustion, the hard legs from training and my preparation units did not last longer than 10km, which is a mistake and I have to reassess my trainings. On the way to the finish, I ran some time with a mistress / aunt, with whom I spoke a few words about run, running in general, about hanging medals, and so on. She was 50 years old, but after about 10-15 minutes I had to let her go because her pace was faster than mine. Also the elders who were overtaking me from time to time were frustrating and motivating for me at the same time, as at their age they can be faster than me. Regardless of how much they have already run in their life.

The second refreshment, once again amazing encouraging people, incredible variety of food and drinks and one of the young people for whom this run took place was there also. I greet the young boy on a track that encouraged us and went on. Then there was a crisis when I could not even scurry and so I walked/ran. A frustrating moment again … At the end of the race, I was overtaken by the babe who had encouraged me and dragged me till finish line. The pace was murderous, but my time would be even worse and feelings from running also, for which I thank her. Before the end I was found by Lenka, who encouraged me, I gave her a kiss (supporters standing beside her were pointing to the left to which I did not respond and went straight to her) and so I passed the finish line. Finish, the handover of the chip (I do not know why I felt like we are keeping it, a really nice bracelet it was) and a medal that changed the color and ribbon comparing to last year. Wood medal is exceptional.

Again incredible refreshment from donuts, bread with “nutela”, oranges, tea, coffee, cola, water magnesium, bananas, everything possible, thumbs up. The finish time 2:37, for 22km 600m ascendance, which is not perfect but a bottom line for me. Lunch included in registration fee, changing rooms, warm shower (however I had icy, because last month I harden) were simply TOP. After the shower I had to put running shorts, because I left my jeans in the car. 😀

After the race we went with Lenka to Max shopping mall in Poprad, where our mom, father and little brother were waiting for us. We had a little shopping session, I bought a great longline t-shirt and sweatshirt, and Lenka bought new jeans and brutal jersey shorts; I’m looking forward to summer … and went to lunch. We went to a self-service restaurant where I picked, besides meat, rice and vegetables, two pasta dumplings and fruit-carrot fresh salad.

Finally, I want to praise the whole race, the organizers for great action, the people for the unforgettable atmosphere and my closest ones for a beautiful day. One can think during such actions about those who are not fortunate and blessed to be healthy, have the opportunity to move and do what they enjoy, which is filled with happiness. But you should never give up, you do never mourn yourself, luck comes out of what we do regardless of obstacles 🙂

ALS BEH medaila 2018

Thank you for your participation! We appreciate the runners who are also willing to travel from around Slovakia for our event. We wish you a lot of health so we can meet again next year!

More info about Jakub Gurka – personal trainer – can be found at www.jakubgurka.sk

The story of Darius Renner

The second year will be dedicated to three people. In addition to the three-year old Mária, who was awarded the first year, we acquainted with the story of 21-year-old Radovan from Trebišov. The third beneficiary will be Dárius whos story you can read below.

My name is Dárius Renner, I was born on July 15, 1998 in Kežmarok. Currently I live in Prešov, I have four yeard younger sister Dušana. My diagnosis muscular dystrophy was diagnosed to me in about 7 years. Untill then I attended a doctor who claimed to me that I have only flat legs.
We thought so untill one orthopedic doctor in Kežmarok said it was a muscular dystrophy which was confirmed by neurotical and genetic examinations. Since the childhood I walk a bit worse than my peers and had enlarged calf muscles. It was getting gradually worse during pre-school age. I often fell from my feet and I had trouble getting up from the ground, I was walking over tips – due to the shortened Achilles tendons. After 4th class I couldnt get up the stairs on my own.

In July 2008 I celebrated my 10th birthday and from November that year I did not move without a wheelchair. These days I find it problematic to raise my arms over my head level, I cant hold my head still without help. For activities such as eating, dressing up, personal hygiene I need help from someone else. My life got a little easier when Organization of muscular dystrofica in Slovak republik gave me an electric wheelchair.
Despite my illness I succesfully completed elementary school. I started studying at the secondary school Digital Media Graphics and in around one year a graduation is waiting for me. If my health allows me I am planning to study philosophy on some collage afterwards – maybe even some other school.
I would like to thank all those who contribute financially or otherwise, as well as those who will participate in the run.

Jan Svocak

ALS Memoriál Jána Svočáka

Ján Svočák (* 3.12.1956 - † 7.3.2016)

Ján Svočák was born in Kežmarok, afterwards he moved to Štôla at a young age together with his parents and six sisters. He began his education at Comenius Primary School and later continued to study at the Secondary Technical School in Svit. After graduation, he had to enlist the compulsory military service he had terminated as a commander of a tank with the rank of captain. After completing his military service he worked in Tatrasvit a.s. , where he began to work as a mechanic of knitting machines. He gradually became a supervisor and production manager. Since 1990 he has been the president of the Matica Slovenská in Svit. Since the child-time he loved sports, especially volleyball, cross-country skiing and football. He spent his free time in the Tatra Mountains, which he loved and eventually he became a cross-hill runner. He also coached young football players for years. In 2003, he changed his employer and started working at the City Housing Management Company as a football field manager. This combination filled him so much that he often spent time in the “work” until the evening hours.

2011 - Year that changed the life of our whole family

The well-known Greek philosopher Hérakleitos has said a beautiful quote, what role does health play in our lives: “Only because of disease we know the price of health”. Many of us do not realize their health if they have it. But if there is a certain break when they lose it, the whole sense of life at that moment goes to a different dimension. That was exactly the case in our family until we found out the worst diagnosis for us. The verdict of the physician was ALS – amyotrophic lateral sclerosis.

Definitely each of you, just as we did at that time, would not immediately know what this term means until we read about it more. This disease is a loss of central nervous system cells that control volitionally influenced muscular movements. The patient cannot control his movements and gradually loses all his muscles in the body. However, the brain continues to work, and in full consciousness of mental abilities, the patient remains paralyzed. Since doctors have not found a cure for this disease, it is very individual how long can a person fight with it. On average, however, people live between 2 and 4.3 years. With this bloody enemy, for more than 5 years Ján Svočák fought well and with pride. A man with a big heart, not only for our whole family but also for the people who have known him, has shown how to live with love, constant goodwill, mutual help and, above all, always be honest and fair in all circumstances. Sports in his life meant a lot. Thanks to it, he had a strong body and the necessary psychological resilience not to give up even against the most difficult life test.

To honor him and to memorize, but also to spread the knowledge of this disease, we have decided to organize a charity race that will give people strength, hope and support even in difficult life situations.

ALS – Amyotrophic lateral sclerosis

ALS

According to the statistics and estimates of the Dôvera insurance company (which has a third share of insurers in Slovakia), 450-500 people in Slovakia suffer from ALS disease. More specifically, from Dôvera insurers it is 150 people. It is most common in the 51-70 age group, more within males. In the last six years, the number of patients with this devastating disease has doubled.

ALS - Amyotrofická laterálna skleróza

If you remember, in 2014, the “Ice Bucket Challenge” called for an ice / water buzz. However, not everyone knew that it was ALS disease awareness, which was a collection for research the disease that is still incurable. This project was an idea of a Dutch entrepreneur Bernar Muller, who was diagnosed the disease in 2010. He sought solutions to support research. In 2013, he launched the “MinE” project and a year later he created this ice challenge. Many people at the beginning criticized the video-message that it was puberty stupidity. Over time, however, it turned out to be a much bigger thing than the first impression seemed to be. Today, we can say that “It was one of the largest and most successful social networking campaigns in history.” It collected an incredible $ 115 million, covering the cost of 6 science projects involving 15,000 ALS patients and 80 scientists from 11 countries. With the money raised, scientists came up with great progress in the summer of 2016. In a journal published by Nature Genetics, they identified the NEK1 gene responsible for ALS in 3% of patients – by hereditary and sporadic form. There is only a small percentage of affected patients – you are right, but scientists believe they have the right “formula” in their hands to fulfill their goal in developing potential medicines.

From this example, we can take a great lesson: When people get together, they can do stunning things! There is just one little idea at the beginning, but instead of despising and criticizing, you have to give hope.

Our Slovak footballer – Marián Čišovský also suffers from ALS, as well as the world-renowned British astrophysicist Stephen Hawking, who died 14.3.2018.

But what is ALS?

The scientific article was provided by the Organization of Muscular Dystrofica in Slovakia

ALS - Amyotrophic lateral sclerosis is one of the neuromuscular diseases

It is a rare neurodegenerative disease characterized by progressive muscular dystrophy resulting in degeneration of central motor neurons found in the cortex and trunk (pyramidal cells of the motor cortex and nuclei of some motor nerves) as well as motor cells in the anterior corners of the gray matter of the spinal cord. The loss of motor neurons is associated with the degeneration of the cortical (pyramidal) path – the major motorway. Although it is a rare and still untreatable disease, it was already clinically and pathologically described in 1869 by the French neurologist Jean Martin Charcot.

In the literature, it is sometimes referred to as Charcot’s disease; in US literature, we meet with the famous American baseball player Lo Gehring – Lou Gehring’s disease.
Because it is a rare disease, incidence and prevalence are low (incidence averaging 1/50 000, prevalence averaging 1/20 000). According to the US ALS association, a comparable number of patients with ALS is diagnosed in the United States annually as with multiple sclerosis. Unlike most rare diseases, ALS affects patients aged 60 and over (80% of rare disease are affected by infants). Men have a larger predisposition (1.5: 1, males: females). Approximately two-thirds of patients with typical ALS have a spinal form that is primarily manifested in the limbs. Symptoms are focal, asymmetric muscle weakness of the lower or upper limbs. Gradually, spasticity develops atrophic limbs, responsiveness decreases, and loses the ability to hold the body properly.

Patients with ALS bulb form gradually develop dysphagia and dysarthria (speech impairment due to speech muscles impairment). The patient has primary problems with swallowing fluids, and then also with solid foods. He cannot swallow saliva, manipulate his tongue, speech, articulation and phonation is broken. Leg disability develops practically at the same time as bulbar damage, and in most patients it occurs within one to two years. Muscle weakness, fasciulism, muscle atrophy, muscle spasm, contracture to paralysis occur. The patient dies as a result of respiratory failure.

The ALS bulb form is more progressive and the average duration of the disease is 2-3 years, whereas for the ALS it is 3-5 years. Only 5% of patients survive for more than 20 years. ALS is commonly known as sporadic disease, but 5-10% of cases are family based. More than 15 genes predisposed to the disease are known today.

ALS management is supportive and palliative based, similar to other rare diseases on a multidisciplinary approach. Non-invasive ventilation prolongs life and improves its quality. The only drug with proven ability to prolong human life and improve its quality is riluzole (N07XX02 – RILUTEK, RILUZOLE ZENTIVA). According to the ATC classification, it belongs among other nervous system drugs. Riluzol does not belong to a group of orphan medicinal products, which in their development benefited from orphan status. It is, however, like many other medicines, a medicine for rare diseases. No riluzole containing drug is currently categorized in the SR. Riluzol prolongs the time until a patient needs artificial lung ventilation. The exact mechanism of riluzole interfering with the etiopathogenesis of ALS is not known. However, it is believed to reduce the excitotoxic effect of glutamate. It is likely to be a glutamate antagonist which inhibits the release of glutamate from the presynaptic terminus and an inhibitory effect on postsynaptic transmission is also contemplated. Based on the results of randomized clinical trials, riluzole prolongs life / survival by 2 months, according to uncontrolled studies, up to 20 months. Treatment of riluzole is reviewed individually by the health insurance company. The vital function of the lungs plays an important role. In advanced stages of the disease, when the patient is reliant on artificial lung ventilation, riluzole is ineffective. ALS management is mainly focused on symptomatic and supportive treatment. It often requires multidisciplinary co-operation of several specialists.

Symptomatic treatment of ALS patients includes:

amitriptyline, atropine, botulinum toxin, glandula parotis radiation – increased salivation
carbamazepine, phenytoin, gabapentin, pregabalin, diazepam, vitamin E – fasciula-
baclofen, tizanidine, diazepam – spasticity
mucolytics (carbocysteine) – dense mucosal secretion
increased fluid / fiber intake, osmotic overdosters, glycerin suppositories – constipation
diazepam – anxiety
amitriptyline, SSRI – depression
percutaneous endoscopic gastrostomy – dysphagia, weight loss
non-invasive positive pressure ventilation support, supportive ventilation mode of home care – respiratory insufficiency
morphine – dyspnea in terminal stages

ALS is curried by a neurologist. The Center for Neuromuscular Diseases, the Neurological Clinic of the SZU and the UN in Bratislava is a specialized department. The exact number of patients with this diagnosis in Slovakia is unknown. Due to the large progression, it is estimated in tens. In 2012, the Center for neuromuscular diseases visited 17 patients with ALS (Špalek P., 2013). For these reasons, there is no separate organization in Slovakia that would only associate family members and patients with ALS. These are members in the Organization of Muscular Dystrophy in the Slovak Republic (OMD in the Slovak Republic), which we have repeatedly mentioned on the pages of the Medical Leafs.

PharmDr. Tatiana Foltánová, PhD., UK in Bratislava, Faculty of Pharmacy, Department of Pharmacology and Toxicology, Prof. MD. Ľubomír Lisý, DrSc., Department of Neurology, SZU and UNB,

Patients with ALS are on their way to the above-mentioned doctor. But what is it to tell the patient the truth? Read his article.

eresting article you find here.

More in English at ALS ASSOCIATION

The story of Maria Kubova

Mária Kubovová

Our daughter was born on 4.2.2015. The first months of Mary’s childhood took place without any serious complication and as expected she began to spin, then sit and later crawl. We were delighted to have such a smart child. We started to think about an another one, which we actually had and we were full of expectations.

Mária Kubovová

Approximately in the 8th month one day during crawling Maria fell down and no strength to stood up. That was a warning signal for us so we consulted it with our podiatrist. In her opinion was Maria healthy, just not eating enough and therefore she is weak. We also stayed in a hospital’s children’s ward. They found out nothing new and the eating did not improved. Days were passing and Maria had more and more of these accidents. After 12th month we asked initiatively for an examination at our neurological clinic. Hospitalization was immediately planned for further investigations. Again nothing unusual but at the last day the child neurologist ordered us for a specialized examination in Bratislava.

On May 27, 2016 our son Matej was born. After so many worries about the health of our Maria, we were happy again.

Mária Kubovová

We got trough examination in Bratislava on June 17, 2016 – EMG scan and blood samples for genetic tests. Waiting for the results seemed like eternity. By the beginning of August 2016 we learned overwhelming and incomprehensible news that our daughter Maria was diagnosed a rare genetic disease – spinal muscular atrophy (SMA) that is currently incurable.

We are all at sea, doctors cannot guide us properly, we practice, rehabilitate, work hard to find information on how to improve the quality of life in this disease and hopefully we can at least partly reverse the poor prognosis of this illness. Our only strength and energy is the love of our children, the faith, the hope and the good people surrounding us and helping us according their possibilities.

As you can see, Mary is a wonderful child. Unfortunately, fate has already brought very difficult obstacles in front of her, which, with poor support from the insurance company, become a daily nightmare for parents. However, I believe that even with the help of our contribution, at least partly, we will make it easier for the family.

 

Mária is now rehabilitating in Poprad Hospital. As it is not enough, parents started to visit to Falck (private company) for exercises from their own resources (7,5 € / 0,5 hour). They also attended a center for handicapped children in Prešov – Svetielko, which cost for 5 days – 250 € (only for exercises, accommodation not included).

 

Rehabilitation exercises give Mary the hope to be at least partially independent. However, it is also necessary to provide medical and compensatory aids for which the insurance company either does not contribute at all, or just smaller amounts. The prices of some medical aids are extremely high.

Update: 3. season 2019

Family Kubovová (March 2019):

Mária Kubovová

During last year many things happened at us and are still happening. We have been twice in specialized centre Adeli (March and May 2018). In May a special cure for Marias disease was approved and since 2 of August it is categorized. Finally, we got it on 31.10. We already consumed 4 doses of this cure and in May we are waiting for the fifth one. Afterwards classification of Marias health condition will take place and it will be decided if she gets more of it. First couple of doses were hard to withstand for Maria but the last one was without complication. During summer Maria had to go to the hospital because of some intestinal flu. I was half a year on parental leave because we had to build entry and bathroom with access for disabled at our house.

Mária a Matej Kubovovci

Now we try to intensify exercising with Maria – at home and during intensive private rehabilitations in Poprad. Her health condition is stable now and we are moving forward very slowly. She is gaining some abilities which she already had before, but she lost them. We hope and pray that she can stand on her own feet one day.

We started to look for new wheelchair for Maria because the one she has is only for interior and we would like her to visit kindergarten with brother Matej. We hope to succeed.

One we have hard time fighting with flu. Matej was at the hospital and today they had to go together with mum again. They must stay there for couple of nights. Till now Maria is fine and we hope it will stay that way.

Mária Kubovová

First year as seen by Soňa Vnenčáková

Soňa Vnenčáková

I do not write a review of races often, however the ALS Memoriál has left a deep emotional experience in me that I would like to share with you. Around two months ago my neighbor Martin Svočák first mentioned me he wants to organize a memorial of his father who died of an ugly disease called Amyotrophic lateral sclerosis (ALS) and at the same time to help a little girl Maria Kubova suffering from similar illness. I was excited immediately. This disease affects the muscular apparatus and all persons muscles starts to atrophy gradually with the brain remaining undamaged. The patient becomes a prisoner in his own body. I do not participate in charity runs often but I promised myself that if conditions allow me I will this time. Even one week before a race day I though I wont attend because of my study and race duties. Week after ALS race I should attend a Prague half-marathon. But suddenly everything changed – the school was canceled as well as my attendance in Prague and I had a free week in front of me. I think that exactly how it should be. I did not hesitate, found a share ride to Svit and HURRAY after two months to my beloved High Tatras region – my home – to my even more beloved family. Even in the car I did not know what a weekend was in front of me. 

Friday I spent as usually by training with Juraj and all afternoon with my parents, whom I havent seen for ages. I finished the day with hot tub that I needed so much. On Saturday morning the sun was shining and I jumped from my bed, woke up Juraj to eat my favorite breakfast slumber “Ala Soňa” with me. Although my legs were solid as logs after Thursdays intervals I didnt care. That day I just wanted to enjoy it, run in training pace and with smile on my face. That was my highest priority after challenging winter – just to start enjoying running again. In addition my father – big athlete, my brother-in-law and my numerous “running family” from High Tatras planned to run with me. What to wish more? 

Soňa VnenčákováThe start was planned for 9am and so after memorialize Mr. Svočák we were ready for run. The challenging track of this Half-marathon starts with decent pace. First 11 kilometers were in slightly undulated terrain. We ran around “Bagrovisko” – a lake where I spent my summers bathing, then we passed trough a village of Batizovce and continued via beautiful meadows to village of Štôla – one of th emost beautiful places I know. A local citizens funclub was greeting us there. Afterwards my favorite walkway towards Podskalka where I heard my mommy in the distance – “Overtake a Polish!” – which I did not understand at that time (she explained me then the Polish man was the first and she was shouting this to all participants), Juraj made me some photos and I ran further. I was slowly earning my position and really enjoyed the race when my beloved hills showed up. I mean big hills – total elevation of 650m what is more than enough for a half-marathon race. First we had a climb to “Borik”, the hill where I grew up and spent many Saturdays and Sundays with my father. At the top I was in slightly melancholic mood. Exactly at this spot we were observing the nature around, eating a snack. Oh, how wonderful childhood I had… 

The descent from Bôrik was something worse. The steep of the hill did not allow my legs to run freely, because I could injure myself by single bad step. At that point somebody overtook me for the first time but that did not bother me at all. Health is now at the first place. In my hometown Podskalka another group of supporters was waiting for me: “Soničkááá lets go!” came from all sides. I knew it was just a local race but I still felt like a world champion who is running with smile on her face. The flatland in Lopušná valley was meant as a relaxing passage befeore the worst (the best) part of the race – climb to Veľký Smolník. Not the first time for my legs – I have been here hundred, maybe two hundred times. Turn left, turn right, little bit straight and lets do this! I can imagine every stone and every tree on this road. After turning into forest I was surprised by a bumpy terrain which is not very common here. First time I have slipped and fell on the ground. Nothing happened – I continued uphills. Most of the people were already walking. My goal was to run whole ascent and avoid walking at all. One step after another I was climbing the Baba hill. I managed to get around two guys, encourage them a bit and continue up to the summit of Veľký Smolník. Afterwards there was an intensive descent which I run probably too carefully. “Just a few more meters” I wa teling to myself and also to another runner. “You are Soňa, right” ask the runner and cheered me up. At Malý Smolník I knew the rest of the track is only downhill. I remember as I climbed once this hill from the other side, grabbed the top pole and cried from fatigue and sadness that was inside me at that time. I was there alone only with my thoughts and God. Now I thank for all those periods which made me stronger. Even on that day I remembered those moments and this time with a smile I continued forward. There was another funclub cheering me, one last curve and the final alley full of my friends, and my family – my sister with her daughter, my mom and Juraj. In the end I was totally cool. I got a beautiful wooden carved medal, apple, drink, tea and even a donut.

A few minutes later my father and my brother-in-law arrived. We drank a coffee and just then the weight of the situation reached me. Only later I did realize the different emotions I had on that day. It was pure happiness, joy, melancholy and especially love. Love to the region I came from, the love for my family, for Juraj and especially the love for God. Today it was not essential the time, pace or hearth-rate – today it was just that I enjoyed every single second, my body was happy. Run for fun therapy in experience. The great thing is that it was not a purely selfish matter. I did not bring joy and happiness only to myself alone but also to the people around me (at least I hope) the family of Mr. Svočák and especially the little Maria, who is going to benefit from our starting fee.

Soňa Vnenčáková

The fact that I won the race was only a bonus that brought me a wonderful hand-engraved ostrich egg in a wooden case, a juicer and a thermo-cup that suits every student. The atmosphere was once again so amazing and pleasant that we even did not want to go home. However I felt hungry and I went home for my favorite cauliflower soup and the bowl full of nuts which give me energy and minerals after every race. That evening it was a purely family atmosphere, a sauna and of course family. When I closed my eyes on Saturday I knew I would fall asleep in seconds. It was not because of fatigue but by a beautiful warm feeling close to the hearth.

Soňa Vnenčáková

My dear readers, we respect the people, the environment and the moments that life brings us. Whether we are up or down, we will try to enjoy every second and every day having a Sunday full of love and smiles.  I also had tough moments last February/March because of my own stupidity. Nevertheless I tried to fight it sporty and tried to learn from my own mistakes. But now I am looking forward going back tot he top where I can see the sun. 🙂 Be nice and do not forget that it is all about the way we look at things and life!

We thank Sona for the nice article. We wish her a lot of health to be able to do what she really likes most and to continue enjoying her life with all her heart.

Learn more about Sona visiting her blog.

First year as seen by organizers

Medaila 1. ročník Memoriál Jána Svočáka

First of all we would like to thank the whole team of people who helped us and devoted their free time to organize a memorial aimed to help families fighting a muscle atrophy. For them we would like to keep going and organize this run annually. To provide them with the necessary strength to fight such an ugly disease.

ALS BEH Memoriál Jána Svočáka

In honour of a great man, athlete, we decided to organize the ALS Memoriál Jána Svočáka in January this year. We promised ourselves to do everything to bring at least 50 runners to the starter line for the opening year. Many runners were telling us that the date is quite early for such a challenging track and maybe they wont dare to participate. We knew that in order to reach required number we would need to to invite runners from other cities as Svit or Poprad. However, after a publishing of the event we were pleased by high number of runners from all around Slovakia and also from Poland. After reaching 180 runners 2 weeks before the start we decided to limit the number of participants for 200 in order to be sure that we can manage it. According to many feedback we actually did quite well and next year the limit will be increased by another 100 athletes. Nice words from participants is a great motivation for us but also a commitment to make the second year even better and to create a wonderful experience for our runners.

ALS BEH Memoriál Jána Svočáka
From the beginning we were driven by the desire to create an event where runners would be glad to come back to help a person suffering from muscular atrophy. We believe this unfortunate diagnosis must be particularly difficult for an active person, for example a runner who is gradually losing the strength and endurance he has been building for years. Inability to move gradually becomes an impossibility to walk, sit, eat or later even breath. Care for such a person remains in the hands of his family 24 hours a day.

“ALS is an incurable disease and to be able to fight with it one needs the hope, encouragement and support of people. We will do our best to give this support of hundreds of runners to at least one family a year.”

ALS BEH Memoriál Jána Svočáka
We have to admit we have found out a wonderful thing while organizing this event. People care for each other. Almost everyone we have asked was willing to help us – financially, with prizes or by participating actively in the organization of the run, what we greatly appreciate. Huge thanks to all of you!

Thanks to these sponsors but also to the runners and people who contributed on the spot we managed to collect 1367€, 160 diapers and 5 cartons of diary products for the 2-years old Mária Kubová from the village of Vikartovce.

ALS BEH Memoriál Jána Svočáka
Part of our event was also collecting caps from PET bottles. We were able to collect wonderful 60kg of them for a little girl Sabinka who is also fighting with a disease.

We will do our best to help even more families at our 2nd annual run in March 2018!

We greatly appreciate all those who participated in the event. This is how we greet you and send you great THANKS!

Best regards, Eduard Dindoffer and Martin Svočák

Be the change you want to see in the world!

According to the European directive, waste is defined as “any substance or object the holder discards, wants to get rid of, or is required to dispose of it.” The average Slovak produces 330 kg of waste per year, with only 8% recycled. The residue ends either in landfills or in a incinerator plant. At least officially. But just get out of your house and see how much of it ends up on the sidewalks, in the bushes or in the rivers and forests.

Švédi odpad dovážajú

But it doesn’t have to be like that. We do care where we live. We are active people and runners in a same time. We are accustomed for long-distance tracks and often get to the remote places that charge us with energy with their beauty. However this is not the case always – and the reason is a man. Many times we are stunned because of what human is capable of. We find scrapped waste at the edge of a forest just because of a few € that somebody is not willing to pay at a public landfill. In Tatras we collect garbage from “tourists” between rocks. We collect beer cans in forest thrown away by mushroom-pickers, etc. And we are not talking about a few dozen of citizens behaving like this – we have seen hundreds of thousands of rubbish. Don‘t you believe? Just go to the woods after a mushroom season.

Krotitelia smetí

There are many examples of incongruous citizens but instead of just pointing at the problem we decided to act. We are aware of a fact that the change has to come from each one of us. That is why we decided to start our own initiative and inspire others.

Places we have to clean up are different every time. Sometimes there is a predominance of textiles, sometimes tires or electronics. Somewhere we have to collect building waste, carpets or even car battery. However the “classics” are plastics and glass – so dangerous for animals. From the labels we can say some of them were waiting for us for more than 40 years.

We were collecting in heat, we were collecting in freezing temperatures. On the roads, in the blade, in the hive even in the river and the result of our year-round effort is more than 350 sacks of waste.

Športuj srdcom o.z.

We have to realize that the number of garbage is still increasing and the nature will not tolerate it forever. It hurts us that the innocuous animals pay the highest price because of greed of man. We want to create a community of people who appreciate the environment in which they live.  We are also trying to reach our local authorities and local government representatives who can provide us some kind of sponsorship. We are very pleased that town of Svit heard our message and with their help we were able to attract 7 new “colleagues”. Thank you very much.

If there is a place in your neighborhood that deserves our attention or you want to join us – leave us a message!

You can get some inspiration from Mr. Rastislav Kruľ, who established Wastebusters.sk project in Slovakia driven by motto: At least one daily!

Figures 1 a 2 from author (pev) are from magazine TV Poprad – jesenný špeciál 2017. Thank you for publishing.

The story of Radovan Zmija

March 8, 1996 – one of the most beautiful days in a life of parents. Our first son Radko was born. He weighed 4200g and was 59cm tall. We couldn’t wait to bring Radko home and to live as a real family. But during third day he got high fewer. Diagnosis was cerebral infestation. We believed Radko wont surrender without a fight. Twenty days later we were leaving the maternity clinic healthy, happy and a little stronger. Few days later we went to a compulsory vaccination and the story started again – 2 weeks of high fewer. Blood sample showed increased liver tests so we went trough several different examinations but everything seemed to be all right. “Radko will grow out from it” a sentence that was repeated continuously.  We were worried so we kept doing blood sampling every 2 months and the results were getting worse all the time. We realized nobody will help us in Trebišov so our doctor send us to Košice hospital. We were hospitalized there 3 times, always examined by another doctor with another diagnosis. Non of them was the right one. We couldn’t understand that nobody knows whats wrong with our son and we were desperate. No treatment was ordered so I called to Bratislava.

Radovan Zmija

I contacted a chief of Medicine there,  who recommended me one specialist in Košice. We were very surprised  because we thought we already know every doctor there. We went trough the same procedures as blood samples, etc. The next day we had a phone call that the results arrived and we should immediately come as they were bad. After a week of another examinations including a liver or a muscle biopsy we went home with the worst  dispatch – “It looks like a muscle disease and your son will stay in the wheelchair from age of 8 or 10.” Of course we did not want to believe it and we still hoped that the diagnosis will never confirm. It was a few days before Christmas when they called us with results – unfortunately it was the truth – Muscular dystrophy. We just celebrated fourth Christmas with Radko.

Every year it was getting worse. When he was 7 he couldnt stood on his feed when he fell or could not walk upstairs. His legs were getting weaker and at age of 12 he couldnt suddenly get up from his bed.

Radko is 21 now and our hands and legs are substituting his own.