Miko about himself

Hi, my name’s Mikolaj and I was born on the 11th of February 2008. Just after I was born the doctors found a significant decrease in my muscle tone however they assured that this happens quite often and can be solved by a simple rehabilitation.

Unfortunately despite an intensive physiotherapy my condition was not getting better. Finally with the persistence of my mum and dr. Trautsolt I got to CZD (Children's Health Center) where I have gone through many consultations and tests. In March 2011 finally the doctors decided to proceed with the muscle biopsy.

The diagnosis was a blow and a tragedy to my family - it turned out that I'm sick of congenital myopathy of unknown origin, characterized by abnormal muscle-building - their fibers are overgrown and are dying of being attacked by necrosis.

However I am nearly 4 years old I have many problems with things that for a healthy child are simple ordinary activities – I’ve never run, climbed up the stairs, I can’t jump and have problems with getting up or sitting down by myself. I get tried very quickly and then - especially at the end of the day – I fell over and hurt myself very often. Due to very weak muscles I have several orthopedic problems with my spine, knees and feet…

The doctors don’t know the exact causes of my illness, and thus also don’t know what future awaits me. I know for sure that I'll never be as efficient as other children but I’d really love to learn it all, with what I have problems.

I’d love to play with other kids, go to school, university and dating with girls… My only wish is to live an ordinary life – just like other healthy kids!

I do have a chance for this, however I require an expensive and systematic (daily) rehabilitation (rehabilitation in- and out-house, swimming pool, hippotherapy, orthopedic and rehabilitation equipment) and systematic care of many specialists (neurologist, cardiologist, physiotherapists).

Such treatment is very expensive and even though my whole family and friends are trying to do their best to help it is still not enough to manage for an ordinary family…

From the bottom of my heart I thank for all help received. With so many open hearts my dreams may come true…