Maladies et thérapies
The SCIG gives the family self-reliance and independence. Being able to treat Simon at home means that they can remain independent in terms of their timetable. They don’t have to go to the hospital, they can administer the treatment at home and make it a part of their everyday lives. When the family go on holiday, they just take all the equipment with them.
Simon explains: “The subcutaneous treatment is not unusual for me. I’ve been doing it for 10 years now and it has one downside, which is that you have to sit for two hours. But it also has an advantage – I can watch movies and that’s just great.”
While he was getting his infusions as a little boy, Simon would look at picture books, and later his parents would read stories to him. Today, Simon occasionally does homework during the infusion, but often he chooses to watch a film on the family tablet. As the family don’t have a television, this is a real treat for the children, and his sisters are sometimes envious because Simon gets to choose what to watch. The fact that the children are allowed to watch a film makes it a popular activity and something of a highlight. Sometimes his sisters will ask, “When will we do the infusion?”
Today, Simon’s parents take turns to do his infusion. Simon is responsible for making the preparations. He gets the medicine from the fridge in advance, he gets out all the equipment – the pump, the syringes, and sanitary items. The spots for the infusions on his thighs are disinfected. The medicine is drawn up into the syringe and the needles are connected. Simon gets one infusion on his left thigh and one on his right. His immunologist says that soon he should learn to do the infusions on his own, which will make the routine smoother when he reaches puberty. Simon’s parents hope that he will be able to master his treatment as soon as possible. The infusion needs to become a matter of routine, like brushing his teeth.
“How you communicate to others always depends on how you communicate it to yourself,” reflects Verena. “We are always trying really hard not to dramatise Simon’s condition at all. You can talk about it quite factually, and at some point people start to open their eyes because they realise, ‘Oh, that’s pretty intense what they’re telling me’. But the reaction would certainly be different if you were to dramatise it in a totally emotional way. We deliberately don’t do that. We don’t want Simon to be treated differently from other children. We just want him to grow up normally. And I think that’s how his self-perception is. He doesn’t see himself as sick.” One of Verena’s biggest concerns is that eventually there will be bacteria that are resistant to antibiotics, and if they spread that would be a huge threat to Simon. Another big concern she says, is “that one day there won’t be enough medicine for whatever reason, whether political or economic. These are two worst case scenarios“.
I have already told some of my friends that I have a disease and that I need to take medication.
Zoran says, “It’s important to us that people understand that Simon’s disease is treatable and also how his medicine is produced. To produce his medication there is only one way: through blood plasma donations.”
“I have already told some of my friends that I have a disease and that I need to take medication,” explains Simon. “I always explain it like this: I always used to get sick and the doctors realised that my immune system was not functioning correctly and I have to have medicine infused once a week.”
Simon makes stop-motion films (produced by taking many individual photographs of static characters that appear to move when the photographs are played back at high speed) of scenes built out of Lego blocks. At school, Simon likes English and music. He is very interested in electronics and technology and wants to learn more about it later and probably have a job in this field. Simon is very active, he plays football and basketball, competes in athletics and sprinting, and enjoys the trampoline. For the past four years he has been playing classical guitar, which he says calms him down when he is stressed. “I play guitar not just because I have to practice, but because I really enjoy it.”
Maladies et thérapies