The last days have been a true hell for me as mother of Jane and Rosa. Rosa has a respiratory infection and Jane has a huge PEM attack, PEM is Post Exertional Malaise. This means that she has had too many stimuli, that she could only stay in her attic room in the dark with a lot of pain. Rosa cough attacks are so intense that she can hardly catch her breath. She also has a huge pain of coughing throughout her entire body. Jane is in so much pain that she is in bed and asking if I can please help her. And even a gently stroke to her hand is too much, and she shrinks in pain. As a mother you feel nothing but powerlessness at such a moment. Your children are sick, in pain, and there is nothing you can do to relieve it. I would prefer to take all of their pain and agony on me, but unfortunately that is not possible. Fortunately things went a little better today, but a further attack is lurking. I can only hope that it will be possible to get the necessary money together quickly. And then it is good that at work you have so many lovely colleagues, who do everything to get attention for our cause. A short one this time, I have to fully use my energy for the girls. Until next time.

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