We were really happy to finally meet 3-year-old knight Zdenda who is fighting bravely with his dragon – this is how they call a rare disease, Spinal Muscular Atrophy (the same disease Stephan Hawking had, but Zdenda is in more serious state). We gave to his family 7.830 CZK – gains from our Halloween party and asked them how are they doing.
We couldn’t be happier, but to hear only great news! Last year, the insurance company finally approved a new type of therapy – Spinraza, which turned the disease upside down and Zdenda is gaining back his abilities to move muscles, which he was loosing progressively. At the moment, he is even able to stand on his own for a very short time and thanks to new therapy and intensive rehabilitation, he is still improving. The family gives huge hopes into a gene therapy that is already successfully implemented in the USA and if approved in Europe this could even mean that they can win over the dragon for good one day! Until then Zdenda is just like any other 3-year-old boy – teasing his older brother, chasing him in his electric super buggy and even trying to ski in a special slide. If you want to find out more, you can have a look @Zdenda a drak.
Photo: Our colleague Jirka who proposed support of Zdenda a Drak with Zdenda