300 million people worldwide need support
We shouldn’t define Lucas with just his disability we should pay attention to who he is as a person. On Rare Disease Day, we want to give a voice to those affected and draw attention to their worries, needs and concerns. And also to hear what inspires them.
Lucas is a young person like every other young person: “I like manga and anime and would love to go to the DoKomi in Düsseldorf (that’s an anime convention). I like doing crossword puzzles, and I like to read.” Maybe that’s why he’s so articulate, although he says of himself that he’s rather shy. “I’m particularly fond of the Dragon Taming Made Easy books which, by the way, are so much better than the films“.
The small but subtle difference.
There are things that set him apart from others his age. For example, because of his AMC Lucas wears a helmet as occasionally he falls. His e-wheelchair also reveals at first glance that he has one or two special requirements. “I am constantly being underestimated. People just see my disability and assume I am incapable, I am actually very observant and on the ball.” This is probably the prejudice that many of the people with a rare disease struggle with.
“Maybe that’s why I don’t like crowds. I used to get stared at a lot. Now not so much. Or maybe I’ve just got used to it?”
Lucas is a real exceptional talent.
Lucas doesn’t have any concrete career aspirations yet but if it were up to his friends, Lucas would be great working at a bank. Eloquent, that’s what he is and also very assertive, he also really enjoys sports. The 15-year-old is passionate about table tennis and football. Admittedly, on the console but when it comes to playing FIFA he’s a match for anyone else.
Aids help in everyday life. Most of the time.
In Luca’s case, it quickly becomes clear that aids sometimes fail to serve their purpose: “I don’t know why it’s called an active wheelchair – I can’t drive it on my own, I have to be pushed. It’s only used when it rains and I have to be driven to school. Actually, I only use my e-wheelchair with a mobile phone holder.” Of course, the mobile phone holder is obligatory for any media-savvy teenager. Which Lucas definitely is. “I also have a madita. from you. But I only use it for eating and cutting my hair.” Well, thats something at least … 😊
Let’s look at the people behind the diagnoses.
Thank you for the insight into your life Lucas. And for reminding us once again that people are still people and not just numbers or a diagnosis. And thanks to your dedicated therapist Anne Peteranderl from the treatment centre in Aschau, who made the interview possible.
Show your rare, show you care!
