ABOUT LITTLE SÁRA

Tel.: +420 776 633 582
e-mail:
curesma@seznam.cz
www.sarakalisova.cz
account number to help Sára
IBAN: CZ8201000000439067220287
SWIFT/BIC: KOMBCZPP
[česky][english][deutsch]
[www.curesma.cz][www.curesma.eu][www.curesma.info][www.curesma.net]
Our daughter Sára Kališová was born November 11th 2004. She is seriously physically impaired because of a disease called Spinal Muscular Atrophy - Type 1 (SMA 1, or Werdnig- Hoffman  disease). This disease in its most serious form is incurable, according to medical professionals. Children with SMA 1 usually die in early infancy, in better cases they live to be two years old.

In spite of the poor and cruel prognosis we decided without hesitation that we will not let her die with the last breath that Sára was able to take on her own. This moment came when she was nine months old. We didn’t let her go even though it would have been the easiest way. We could have “coped“ with her loss and lived a normal life, fulfill our dreams and life goals. Instead, we chose a rocky road full of obstacles posed both by the state services and the medical insurance, or people who tried to deceive us for their own profit, imposters who promised miraculous cure for huge amounts of money with no results, but also people who had the need to deal with their petty problems by hurting us. We had to face senseless envy. However, great support came from people who helped us financially so that we could buy expensive, vital medical equipment for inhome care, medical supplies, medicines not covered by the insurance. We will be forever grateful to these people. We were happy for any kindness, any helpfulness or emotional support as we were not getting these everywhere.

When she was nine months old, little Sára had to undergo tracheostomy, she had to be connected to a ventilator that is breathing for her around the clock. When the ventilator was disconnected she could not breathe on her own, her vital functions started failing immediately. Sára was so week she couldn’t nurse nor swallow her own saliva, she was undernurished. In the end the doctors had to insert a gastrostomy feeding tube directly into her stomach for her to be able to get nutrition. Soon after, Sára’s motionless little body, weakened to the maximum, started to come to life.

We did all we could to get little Sára home from the hospital as soon as possible, which we managed to arrange withing three weeks, what in most cases takes many months. She was very susceptible to any common sickness, any viral infection could have taken her life. A couple of times we had to call the ambulance before we found out that in a moment when minutes or even seconds can save her life, it is better to cope on our own and not take Sára to hospital and expose her to a host of other problems and life threatening circumstances, infections, etc.

Even though we are just normal parents we learned to perform procedures that are commonly done only at intensive care units, otherwise Sára would not live. Tasks that are done by teams of hospital specialists in shifts, we have to manage at home day and night, sick or not.

When we found out about Sára’s disease we tried to find help all over the world, we got into contact with specialists from every corner, studied various researches that promised cure withing two years. We have been through five two-year periods already but no breaking news yet. We grasped at straws, tried to find out what would help Sára’s health but we found very little concrete or useful information. The greatest progress and a change for the better was achieved here, in the Czech Republic, when Sára was about seven years old. It was the Czech clinic Aura Medical Clinik that helped us in Sára’s treatment and since then Sára started to get much better, everything in her little body started to work, come to life.

People that don’t see Sára every day might say that she just lies down, doesn’t move nor sit, doesn’t speak, cannot eat on her own, cannot swallow her saliva, has no strength to cough, cannot breathe on her own, sometimes she has a hard time evacuating her bowel. But little by little she is doing better healthwise, even though she needs a ventilator to breathe for her, we have to feed her with a syringe into the tube that leads to her stomach and she needs a number of vital instruments and aids to survive. She can move her feet and hands, she even learned to move her ears, which seems useless, but it is proof that her body is getting better. Her mind and her thinking are absolutely all right, she is very sharp, inquisitive and smart. She tries to communicate with us with her big eyes and with the help of sounds that she lines up into syllables (she cannot move her tongue or lips to pronounce a word), we communicate with melodies of various songs. It is interesting that she sings the melodies while inhaling.

In order to build a barrier-free home where caring for Sára is safer and easier, we had to live for several hard years in conditions that are difficult to imagine to most people even though Sára should live in sterile environment. Things are much better now, though, and all the bad things that hurt everybody’s health in the family actually in the end strengthened Sára’s immunity and in combination with therapy and maximum care she is doing better and better.

She doesn’t suffer from any viral infections, does need any antibiotics. Naturally, the disease causes great physical limitations, but emotionally she is balanced, satisfied, happy, sees no problems in anything. She gives out so much joy and good humor we believe it is because she can rely on us. She trusts us and we will never betray her even if there were thousands of adversaries in our way who don’t want to give these children a chance to live.

The lives of families with these seriously ill children is often happier and fuller than the lives of some people who just criticize everyting around and spend time solving petty problems of everyday life. Those people were never in our situation, they don’t have enough information about the children’s condition and so they have no right to judge what is right and what is wrong. Their argument that Sára uses up money from the national health insurance at the expense of people that could be fully cured, is nonsense. By taking care of Sára at home we save the insurance and the state big money. With the support of people who stand by us and wish us well, we can help Sára to live a longer life than given by the statistics, a life more joyful and humble. Our experience has already helped many families with similarly ill children and they are very grateful for our advice.

We don’t use any professional care givers or nurses that would help us, even for an hour, to care for Sára, instead we take care of her on our own entirely and around the clock. She has to be under constant supervision and we cannot rely on the apparatuses that check her life functions. It is exhausting but at the same time fulfilling, it is the meaning of our life to see her content, comfortable and happy. They say we are the only ones in the world that don’t make use of a medical professional for such seriously ill child. But as long as we have the strength we will keep on going, Our great helper is our healthy daughter Natalka who loves Sára, will do anything for her, every whim that Sára comes up with she will want to fulfill. When necessary, the sisters stand up for each other to get their way from their parents. They are loving sisters, they both know the value of life, they enjoy spending every moment together, they can even have an argument, but they would breathe for each other if it was possible.

Thanks to Sára we had the opportunity to learn about the true value of life. Our wish for the future is to see Sára sitting up in her wheelchair, breathing on her own and talking. Everything would be so much easier if we didn’t need to use the apparatuses. If this dream came true it would be the greatest reward for us. Even so, we are grateful that Sára is physically and mentally doing better in the face of the this deadly disease.

We would like to thank you very much for your emotional and financial support.
HOME I NEED HOW YOU CAN HELP CONTACTS
ABOUT LITTLE SÁRA MUSCLE ATROPHY THE STORY PHOTOGALERY VIDEO

SPINAL MUSCULAR ATROPHY TYPE 1 - SMA 1

[home][I need][how can you help][contacts][about little Sára][muscle atrophy][the story][photogalery][video]
© Copyright 2015, all rights reserved. Designed by daddy Radek Kališ, www.sarakalisova.cz