SPINAL MUSCULAR ATROPHY TYPE 1 - SMA 1

SPINAL MUSCULAR ATROPHY SMA 1 - ABOUT LITTLE SÁRA

ABOUT SPINAL MUSCULAR ATROPHY, SMA 1

MUSCULAR ATROPHY IS ALSO CALLED

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THE STORY OF  LITTLE SÁRA

ABOUT LITTLE SÁRA MUSCLE ATROPHY THE STORY PHOTOGALERY VIDEO
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.
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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.
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the number one genetic cause of death for infants below two years of age, is one of genetic and fatal diseases. It is a neuromuscular disease that causes a gradual weakening of muscles, taking away the ability to move. The progress of the disease is individual and depends on many factors.

Common tests in pregnancy will not diagnose SMA. Only tests targeting directly SMA in the unborn child can confirm or rule out the disease. Every 40th person is a carrier of the disease. On average, one newborn in 6,000 suffers from SMA.
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Tel.: +420 776 633 582
e-mail:
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SMA

SPINAL MUSCULAR ATROPHY

SMA I

SMA II

SMA III

SMA IV

MUSCULAR ATROPHY

WERDNIG HOFFMANN

MYOPATHY

NEUROMUSCULAR DISEASE

MUSCLE ATROPHY

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