Who am I
I live in a normal family that faces up to an abnormal situation of dealing with my illness. Slowly we are learning the difficulties that come with the disease. Since my parents think that I am an exceptional person and each such a person has their own websites, I do, too! This website expresses our need to share our life experience the disease brings to us. Another reason is to provide up to date information about me for the people who support me as well as for the organisations which focus on discovering a new treatment for SMA!
Diagnosis
I have spinal muscular atrophy type I. I have 3 copies of the SMN2 gene. These are copies of the SMN1 gene that is missing.
For more information about the disease you can check the following links.
My day
At night my head is terribly sweating and time to time someone must turn me as I am not able to turn myself. When I have a good night, I need to be turned only 3 times, when a bad one, my dad has to turn me as Peppa Pig on a spit :)
Dad: "It cannot be said Bozhenka is a big eater, however, it is very important to never let her fast and thus use the energy in the rest of the muscles that she has. What helps us? Popular TV Shows such as Peppa Pig and Singing for children. With them she eats without any complaints."
Every morning and evening we do exercises, those by Prof. Vojta as well as various other breathing exercises including singing that I love the most! I love also gummy bears, ice cream and cookies, but it is a different story. A massage of my chest and back follows, which I like very much. The worst, though, is stretching of my legs, which is far more bearable in the evening because I do it in the hot tub.
At least once a week we have a doctor's appointment and twice a week we regularly go for acupuncture. They are really nice doctors and ladies at the reception desk. They have amazing tea "čajík" that I always want to drink by myself!
Since I have a very little ability to play alone, I need constant attention and assistance.
In the evening, I like talking with my parents and I don't want to sleep, my mom or dad always falls asleep first ...
