One could say that the birth of your first child turns over the whole world… and this is true! However, the serious illness of one’s beloved child captures the true meaning of this saying.
Mikolaj was born in frosty, but sunny February day. I still remember holding his in my arms for the first time ever, when the sun came in through the window illuminating the whole hospital room. However cliché it may sound, today I have the impression that this was an omen how much he illuminates my whole life.
Like any desired child, he brought to the whole family enormity of dreams and plans. And like any mother, I imagined that I will grow a son as best I can and I will watch in the future how he grows, learns, establish own family, and leads a successful life full of happiness.
The information about the disease has been for me and my family a huge shock and unimaginable pain. However it failed to destroy our determination and will to fight for each and every day, every ray of the sun, a health and fitness as the longest.
Mikolaj was born after well and normal pregnancy as a healthy child. He even got 10 Apgar points however it turned out that he suffers from severe contractures of hands and feet. The doctors assured me that sometimes this happens and adviced sensitive massages of the muscles.
For the few next weeks, despite the tiredness, like any fledgling mom, I got wild with joy and happiness of having beloved son. After 6 weeks I went on a visit to our family - friend Dr. Trautsolt for the neurological routine check. I heard that Mikolaj seems to have too week muscles.
The alarm has not been initiated then, as reduced muscle tone for such a small children is not a rare thing, and in other aspects my little Sunshine has developed well. I was recommended first rehabilitation, which systematically conducted gave (small but always some) results.
Unfortunately it happened that the difference in motor development of Mikolaj in relation to other children was evident - he sat down at the age of 10 months, crawled at the age of one year and began to walk when he was a year and 7 months.
Even then it was clear that something is very wrong - the child did not maintain a balance, wrongly put feet, felt over every few meters. Unfortunately, the doctors kept assuring me for a very long time that the problems stems from Mikolaj’s "beauty" and through rehabilitation he will come out of this.
When Mikolaj was nearly two years old, the wide study of the blood enzymes were done. The results were not good as some of them were too high, which could indicate a muscle disease, but again, the doctors reassured me saying that if it was something really serious the result would be much more exceeded.
I am not able even to count how many doctors we visited and how many hypotheses about the health of my child I heard at that time.
A breakthrough was finally made when Mikolaj was three years old, in March 2011.
We managed to get to the ward of metabolic diseases at the Children's Health Center, where several studies including a major - muscle biopsy were performed.
The diagnosis came after three long and restless months at the Children's Day, which was supposed to be a good omen but wasn’t...
I got to a hand results, and I was told that my son is suffering from an incurable, muscle disease, that muscle fibers are overgrown and are dying of being attacked by necrosis… that there is no hope, nor cure for us…
I heard that even to get an accurate diagnosis is extremely difficult – the are plenty of types of myopathy and some are still unexplored by today’s medicine.
Mikolaj is currently being further diagnosed by the best available in Poland Ward of Muscle Diseases in Warsaw. We are impatiently awaiting for the results and hoping that it will bring us a positive prognosis for the further.
Regardless of the final (if possible) diagnosis a key point in our fight against disease is continuous, intensive and specialized rehabilitation - unfortunately expensive and beyond daily training with specialists and two – three weekly intense rehabilitations (necessary few times a year), requiring to do the exercising at home as well.
At the moment Mikolaj is under care of neurologists, cardiologist and orthopedist. He can walk however he has never run, rode a bike, climbed up the stairs, played on a playground by himslef, he has problems with getting up and sitting down by himself. Despite all this problems he is an incredibly happy child, who keeps trying to handle ordinary activities as much as he can.
This year he became a proud preschool member and a daily contact with healthy kids is a huge happiness and joy for him – so important as a part of therapy and propulsion for a continuous fight to become same, efficient, independent boy.
As all children he has his own dreams – one day he plans to become a football player another a driver. Cars are his biggest passion – he is able to recognize their brand, model, and even types J
As each mother I desire that he could not only make his dreams come true, but to keep shining for me with the same warm, sunny sparkle – the same that welcomed him on this world during one of the most beautiful winter day.
Mikolaj, me and my whole family will be deeply grateful for any help and support given for our daily struggle and fight.
Every penny…cent… is vital and is a gift and goodness and open heart, which always returns to the sender twice.