How MainLichtblick meets the wishes of sick children

Eit is an unusual wish. Most would like to meet football star Cristiano Ronaldo or at least get an autograph from singer Adel Tawil. So what Tobi’s mother wrote on the wish list sounds far more down to earth, maybe even a little boring at first glance: the fly net. Really good that closes tightly and after all does not break with the first draft. But which child wants mosquito nets?

The answer is very simple: Tobi. Tobi is ten years old. He lives in Wiesbaden, on the outskirts, overlooking a meadow and fields. A beautiful corner. It’s just silly for mosquitoes to constantly buzz into his room and bite him. Once upon a time, it was almost his downfall. For Tobi can hardly move. Once last summer, when an insect flew into his mouth, his throat swelled and he was almost suffocated.

That can not happen now. For a couple of weeks, Tobi has had brand new mosquito nets on his window and all the other doors and windows in the apartment. Cost point: 1700 euros. Tobi’s mother, single parent Michaela Kirsch, could not afford it. Therefore, she asked the association MainLichtblick to fulfill Tobi’s important wish. So artisans came and installed the rods. Now a gentle breeze blows through Tobi’s room with the green blinds and hundreds of cuddly toys.

Already 130 wishes fulfilled this year

MainLichtblick is based in Frankfurt and has fulfilled the wishes of seriously ill, traumatized and disabled children in the Rhin-Main area with its team of seven since 2013; A few days ago, the association once again raised money for this at its charity gala. Guests at Villa Bonn were asked to contribute something. You can also donate to a specific request. Last year, more than 100,000 euros were collected. Employees meticulously document what the money is used for.

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MainLichtblick has already fulfilled 130 wishes this year. Each has a little story. For the moment when a dream comes true is also something special for the wish-fulfillers: They are confronted with serious illnesses every day. So it is good to see the affected children smile. “I can do nothing about the disease, but I can create a little ray of hope,” said Frank Fechner, CEO of MainLichtblick. The team around him and Brigitte Orth record the successes. Also present: 14-year-old Frida from Ukraine.

Before fleeing the war zone, she badly injured her knee. She had to have surgery, but the clinic would not operate until it was clear who was going to pay for it. MainLichtblick jumped in spontaneously. Frida now has a functioning knee again. The fulfilled wish will follow her for the rest of her life. But there were also completely different wishes in the past: Ronaldo was of course already there, but also a tablet to be able to participate in home tuition, an internship on the farm, an exoskeleton for 10,000 euros so a child can walk again, a therapy dog ​​or horse therapy . And there’s Tobi and his fly net.

Fighter: Michaela Kirsch believes Tobi can get well again.  Kirsch wants her son to be treated as normally as possible - which is why she sometimes hides the entrance to the larynx behind a scarf, for example when there are visits.

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impressions of his life

Tobi suffers from childhood dementia, this is what his diagnosis is commonly called. The official name of the disease is NCL2, late infantile neuronal cereoid lipofuscinosis (type 2). It is a so-called storage disease: the brain cells can no longer break down certain waste products. They store it, scatter it, so to speak, and die. As a result, the child learns all mental and physical abilities and eventually becomes as helpless as a newborn.

The NCL patient eventually loses control of their bodily functions, requires artificial feeding, and is a 24-hour caregiver. This is already the case with Tobi. A feeding tube supplies him with food. The NCL Foundation estimates that in Germany around 700 children suffer from NCL, worldwide it is estimated that 70,000 are affected. The disease is not yet curable.

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