THE STORY

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e-mail:
curesma@seznam.cz
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account number to help Sára
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There are four types of muscular atrophy none of which can be diagnosed through common pregnancy tests. It is first diagnosed after birth. SMA Type 1 is unfortunatelly the most serious type, fatal in early infancy. Nonetheless, I got a chance, and live a wonderful life, even though a much harder one than what it would be if I was healthy.

Having SMA 1 means that I will probably never be able to stand up on my own, to walk, sit, eat, speak, swallow, breathe… I cannot survive without vital medical equipment, and in particular, around-the-clock care of my parents and my sister Natalka. I can rely on them 100% day and night. With my slightest cough they have to be by my side immediately and help me so that I don’t suffocate. So, if I cough twenty times a night my Mom doesn’t get much sleep. But Mom doesn’t mind, she only gets upset when the machines are giving her a hard time or when I am upset.

My parents  feed me pureed food through a tube leading directly into my tummy. I cannot swallow any food, drinks or even my saliva. My muscles in my entire body are very weak but my frail and motionless body can feel every touch, from my toes all the way to my hair. I love it when my Mom scratches me, when she strokes my face, when she excercises my little body.

My intellect and my thinking are not affected whatsoever, I am aware of everything around me, they say I am very smart and sharp, I can remember everything. At home, everything is arranged to accommodate me.

My parents had to build a new barrier-free home to suit my serious condition, even though the construction took several years and we all had to live in all that dust which affected badly my health and the health of the whole family. But I am much better now.

In spite of all doctors‘prognoses and difficulties I have to face, I am happy and enjoy every moment that I experience amidst my family full of love and self-sacrifice. Everybody around me adjust their schedule to meet my needs leaving no time for their own needs. Day after day they place my life and comfort above their own, they have given up on their own personal life, their reward being my joy, well-being and my better health.

In recent years I started making small but good progress, I have perfect immunity, I can communicate with the help of melodies that I can sing (I cannot articulate the words because my facial muscles are too weak), I can move my feet a bit, I can make minute motions with my fingers and my palms, I even learned to move my ears! I can do incredible things with my eyes, I can communicate with my eyes. Mom says I can see behind me, nothing will escape my attention. But standing up on my own feet and walking, that would be a miracle, something current medicine will not be able to give me for many years.

My big wish is to be able to live without all that medical equipment, not to worry how long a machine can last without electricity, or whether the machine will break down just when we want to go for a walk. My wish is to be able to sit up in my wheelchair, to be able to breathe on my own: it would be a totally different life, everything would be so much easier. I could enjoy everything that is only my big dream today.

My care is very demanding for my parents both physically, emotionally, and financially. There are so many things that would make my and their life easier, but neither the medical insurance nor the state services will cover them. I actually save them astronomical amounts of money for hospitalisation because my parents take care of me at home. Instead, the insurance company and the state “reward“ us in a way that makes us dependent on you, the donors. Without you I woudn’t have a chance.

Thank you for your support and for sharing my story with your friends.
Sincerely,
Sára
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SPINAL MUSCULAR ATROPHY TYPE 1 - SMA 1

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