By: Diana van der Meij-Kim

I have always been a very lucky person. Everything was working out in my life just fine, without much effort on my side. I finished the school with honors and was admitted in one of the most prestigious  universities of Moscow. After graduation I got a great job at the TV station and couple of years later moved to the Netherlands. I had had lots of fun and few not very significant relationships in my life before I met my husband at the age of 32. He was exactly the type of a guy I dreamed of: young, good-looking, successful, smart and generous. And he fell in love with me at the first sight. Half a year later I was married and pregnant with our first kid. And then with our second kid. I was so happy! And so lucky. Nothing bad could ever happen to me… Or so I thought. Bad things were happening to other people. But not to me and not to my family!

And then one day my illusions got totally smashed when the neurologist uttered the few most terrible words I had ever heard in my life: “I suspect that your son has a muscular dystrophy disorder”. It was like somebody hit me in the stomach out of the blue. Actually it was not totally out of the blue: some signs of the up-coming tragedy had been there before, but I ignored them with the naivety of a happy person. Like when our youngest son was playing football one of the mothers noticed that he held his right arm in a strange way, as if it had been injured. “Its just the way he runs”, we thought.  Ivan was 7 years old then.  He also had a peculiar way of smiling, with the corners of his lips a bit down. Nothing to worry about of course! Even when the school gym teacher expressed her concerns about Ivan not being able to climb up the rope, it did not bother us that much. My husband also never could climb up the rope at the gym class. Big deal! Only when Ivan’s right shoulder “dropped” down and he started showing  signs of asymmetrical development, then we started getting worried. Not too much. I was sure there was nothing seriously wrong with him, nothing that could not be fixed with a physiotherapy session or a pill. Or a small surgery in the worst case scenario. Simply because nothing too bad could ever happen to me, right?

So when the doctor confirmed his suspicions with a verdict FSHD, my happy and worries free life as I had known it was finished forever. Ivan was 10 years old then. I was devastated. I remember I asked my husband: “What has happened to us? Why?”, he answered: “Life has happened”.  He has always been a more down-to-earth person, thanks God. If it were not for him and my oldest son, I would have probably got broken. After the immediate shock of the diagnosis my husband somehow got optimistic: after all the disease is not terminal and the therapy is in development.

It took me longer but I finally got out of my hole too. Though on my own manner. My husband and my kids prefer to ignore the fact that Ivan has FSHD as much as possible. Ivan can still lead quite a normal life, practices sports, bikes to school. I cannot ignore it on the other hand. I need to do something about it. So I joined the board of directors of the Dutch FSHD foundation, became a member of the FSHD working group of the Dutch muscular dystrophies organization and finally was elected the president of the FSHD Europe: the European patients organization. All within the first year after the diagnosis was established.  It gives me a satisfying feeling that maybe my efforts will shorten the way to the therapy. That’s my way of coping with the problem.

We talked a lot with Ivan about his sickness, especially at the beginning. Now he would rather ignore it. He said to me once: “Mom, but you have always said that the most important thing in life is health.” I realized then that I did not think like that anymore.  Now I think that the most important thing in life is your spirit. You hear about physically very healthy people who throw their lives away on drugs and drunk, or commit suicides. And then you see physically restricted people showing amazing achievements: become Paralympics champions, write books, make scientific discoveries. Or simply live a happy and fulfilling life. Physical health is important, all right, but its not everything.

Of course I would much rather prefer that my both kids were healthy. But I cannot change what happened, so I try to make the best out of it. If it is at all possible to speak about positive things that FSHD has brought into my life,, that would be quite a few. My life got a purpose, and a good one too: to help in finding a therapy against FSHD.  I start appreciating my family even more after  Ivan got diagnosed. I have always suspected that I have the best husband in the world, now I know it for sure J. Also I met a lot of good and courageous people through my work within FSHD community. And I start appreciating much more those good moments that life offers you.

And maybe in some way this disease is going to make Ivan a stronger and a better person. He would have to knock harder to achieve things in his life.  As they say, what does not kill us, make us stronger!