Help for my daughter Pandora

von Pandoras Vater Moe:

Today, my little one received 35th time of blood transfusion. In the procedure, she felt a little uncomfortable because of mistake from nurse. So she was not happy and she cannot smile at all. I felt so bad for her and we don’t know how many time she need to go through this procedure again and again. 350 times! 3500 bags of blood for her whole life! We really don’t know. And at the same time difficulties of my life! I start to think one by one and I really don’t know how to face or how to overcome the situation now I am facing.

I need to take full responsibility for my parents and my 2 kids. Word is easy to say but in action is so hard to do it. And also you need to know our country situation. They do get some amount of money for their ( the hospitals; anmerkung tomtomtofu) services. Even if the amount is  little. Only nearly US$ 35 each. But we don’t have any government support for medical and education program for people. They just have only building and we need to pay everything and anything. From one needle to a bag of blood, we need to pay our own. For you, easy to understand, every time I bring my mum to clinic for just check up, I need to spend about US$ 35. Their pension  is only for 10 days general use ( Die Rentenbezüge der Großeltern). So every month I need to pay US$ 70 each pocket money to keep their lives like normal. At the same time I need to give regular medication for their health. Only May Moe (Pandoras Vater), no need to take any medication. For mum, dad and mary, need to spend US$ 70 for regular medication only. For little one, I will explain later. And for my house general use, I need to spend at least US$ 700. That is just good enough to put meals on the table.

Now about my little one. I want you to know very detail about her. Especially her health condition. You know, she has severe blood disorder. And she need to put blood to keep her alive. So, now how much blood she need! Its need to calculate on her condition and her body weight. Roughly, 20 ml for one kg of body weight. That mean, now she has 13kg and she need 260 ml of fresh blood. That is more than one bag because one bag is only 200 ml. it mean she need blood 2 bag from 2 people. One day she becomes big and if she has 50kg, she will need 1000 ml and that will be 5 bags of blood from 5 people. She will need that one every 3 or 4 weeks. At the same time, she need to take one kind of medication to clear her iron poisoning. That dosage of medication also depend on how much poison she is having. She put more blood, she will be poisoned more. Now she is taking 2 capsules and it can be all the way 15 to 20 capsules per day. That medication can cost between US$ 5 to US$ 1 each depend on availability.

Now we are taking blood from one person each time and it cost US$ 100 for the whole procedure. One bag of blood costs US$ 35.

So now you can calculate how much need to spend for my little one, now and in future. Its need till she die.

Now I try to set up my own center (Physiotherapie für behinderte Kinder). But I have failed. Income of center is just enough to pay staff salaries and rental. All other expense and my house expenses, I need to use my saving. Unfortunately, in this year, my mum and my little one medication condition is not good and many time need to go to clinic and hospital. So now, I am very short of cash. Now also I don’t know what will happen in next few months.

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