And now…

After a brisk start, the funding now runs less smoothly. We’ve passed the €21.000,-, which is great off course, but it would be better is things were going faster. From different sides people asked me why I haven’t reached out to the local or national media. And yes, it’s an option that should be addressed. But it’s a huge step. The decision to start the crowdfunding in itself already was an enormous step. Giving up on your privacy, sharing all the difficult times we’re facing, I find it rather a big thing. And it’s not just me. Jane en Rosa are 20 and 18 years old, this attention for their condition and their lives is a massive invasion and results in a lot of tension. Tension makes them feel worse, so that’s another difficulty. And sure, we do it because it’s necessary and we really don’t have a choice. But that doesn’t change the fact that the situation is extremely difficult. It controls all of my day, checking the mail if the donations keep coming, coming up with ideas that generate funds, writing a blog. And above all that the weather isn’t helping either. I used to love the heat, but now the heat equals problem. Jane and Rosa have a problem with controlling their body temperature. They can’t lose the warmth. Yesterday after a short visit at grandma, Jane passed out walking to the car. The fainting in itself is sort of a normal thing nowadays, what worries me is the time Jane is out. It seems that every time she faints it takes a bit more time for her to regain consciousness. Fortunately Rosa doesn’t pass out as much as Jane, and it takes her less time to recover. So, there we were. Flat out on the ground next to the car. I arranged it so that she was in a more comfortable position and lifted her legs up a bit to improve the blood flow to her brains and we waited until she was fit enough to get into the car. Grandma upset, because she knows about the fainting, but she haven’t seen it that often. Once home, Rosa positioned herself on the couch to rest and Jane went up to the quietness and darkness of her room. But she had passed the limit of stimulus and she passed out a few times more. I went up and down the stairs more than once. Not that I can really when she gets like that, what I can do is lay down beside her and try to give her some distraction until she is ready to get on her feet again. We received the ordered neck braces which dr. Gilete advised. They must wear them when they travel, are hurt or need help lifting their heads. It’s very confronting to see them in it and how it limits their mobility. But they are necessary to keep the damage on their necks under control. It has been an emotional week. Coming back to the start of the blog. Yes, considering all of the above we do need more attention to raise more money. But give us some time to adjust to the idea of even more exposure. In the meantime there are e number of things being organized. Jumbo Korneef collects the deposit of the plastic bottles of the month October at the shop in Wateringen for our foundation (with media coverage when we receive the check), calendars are being developed, T-shirts are getting ready to be ordered and the engraved glasses are being ordered. Delivering of the glasses takes some time because they are hand engraved and that takes time. So enough to look forward to and in the meanwhile we’re still are in a discussion with the insurance company. But wouldn’t it be great if we all together could increase the funds so much faster and reach our goal. I’ll keep asking you to share and donate and I/m thanking you for it in advance.

Love,

Monique

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