I live in anormalfamily that faces up toan abnormal situation of dealing withmyillness.Slowlywe are learning the difficulties that come with the disease.Sincemy parentsthink that I aman exceptionalpersonand 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 reasonis to provide up to date information about me for the peoplewho support me as well as for the organisations which focus on discovering a new treatment for SMA!
I havespinal muscularatrophytypeI.I have 3copies of theSMN2gene.These arecopies ofthe SMN1 gene that is missing.
For moreinformationabout the disease you can checkthe following links.
At night my head is terriblysweating and time to time someonemustturn me as I amnot able to turn myself.When Ihave a goodnight, I need to be turned only3 times,whena bad one, my dad has to turn me asPeppa Pig on a spit:)
Dad:"It cannot be said Bozhenka is a big eater, however,it is very importanttoneverlet her fastand thususe the energy in the rest of themusclesthat she has.What helps us?PopularTV Shows such as Peppa Pig andSingingforchildren.With them she eats without any complaints."
Everymorningandevening we do exercises, thoseby Prof.Vojtaas well asvariousother breathingexercisesincluding singingthatI love the most!I lovealso gummy bears,ice creamandcookies,butitis a different story.A massage of my chestandback follows,whichI like very much.The worst, though, isstretching of my legs,whichisfarmore bearablein the eveningbecause Idoitinthe hot tub.
At leastonceaweekwe have a doctor's appointment andtwiceaweekwe regularlygo for acupuncture.They arereally nicedoctorsandladies at the reception desk.They haveamazingtea "čajík"that I always want to drink by myself!
SinceI have a very little abilityto playalone, I needconstant attentionand 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...