My best friends have written a blog about what they think about my sickness, their hope for the future and the crowdfunding campaign. I get so much support for my girls and I am so thankful for them and because of them I can keep going and have hope for the future.
I have known Jane since kindergarten, we were both 4 years old. We always tell everyone about the first day we met, that we hated each other. And that the next day we were best friends immediately. This story isn’t entirely true, but it’s a good story to tell. Since that second day of kindergarten we’ve been BFFs, Best Friends Forever.
Jane and I grew up together, we always did everything together at school and as often as we could hung out after school. I soon saw her as not only a friend, but like a sister.
I find it extremely difficult to see and read everything that’s happening to the girls. It pains me to see. I look at two amazing, smart and beautiful girls, young women, who are so constrained by their illnesses, that even the little things are no longer possible. Jane and I were often together, hanging out, going for a drink in the city or to go to the movies together. We haven’t done this in a long time. I want nothing more than for these two girls to get their lives back so that they can go back to school, go out again and do everything they should do at this age. I’m trying everything that I can so that I can help the girls with fundraising
Occasionally I think about what will happen if the operation doesn’t come in time or if it doesn’t go well, but I stop myself doing this. I don’t want to think about that. I regularly think of the nice vacations that I had with Jane and the other girls in our fiend group. Going to the waterpark, where we only went down the slide in the evening because then all the children were gone, and we had peace. Or in the bungalow park where the four of us (Jane, Tara, Iris and I) spent a week and were has a wonderful time. Or the times that we went to the terraces drinking, watching people and gossiping. On the beach with a bottle of rosé per person. I miss these moments the most, not only for myself, but also for Jane. Girls of this age should be in the prime of their lives, not at home stuck on the couch because they can’t move due to pain. You wish this to nobody. I love these girls so much, they feel more like family, and I feel at home with them. I want them to get their lives back again and give them back the possibility that they can do things that they want without emptying their agendas for the days or weeks so that they can rest.
How nice would it be if Jane and Rosa would get their lives back. How nice would it be if they could go back to school. How nice would it be if they could go out for a day. How nice would it be if they can go grocery shopping. How nice would it be for them to no longer start the day tired and broken.
I met Jane in 2011 at school. A cheerful, sporty and enthusiastic girl, who was happy and excited for the future. In the course of that year I noticed that she often had doctor’s visit and had to go to the hospital a lot. She told me what kind of illnesses she and her and her family had and what they were going through, it shocked me. Over the years, I watched Jane and Rosa deteriorate. More often not at school, a lot of havening to sit down, a brace around her leg / arm and sometimes with a walking stick. Since last year, 2019, the decline has been accelerating. I find this very heartbreaking and sad to see.
In the summer holidays of 2015, we as a group of friends of 4 girls had been away for a week. This was delicious. We had an apartment in a holiday park, with an elevator, a bath and a sauna. Three times guess who was in the sauna! During this week I was really worried about the facts. Jane, what a power woman! You never heard (and still do) complain of pain or fatigue.
Our group of friends has been fantasizing for a while that if Jane has had the operation and can normally go through a day like everyone else, we are going on a city trip. Hopefully 2020 will be the year of Jane and Rosa!