By heart for Matyasek
Here we come. After collecting CZK 5 000 for the Indian girl Diya for tuition, we started looking for another "victim" who could be helped by few more extra Czech crowns from us and from our customers.
We received a tip for the wonderful family with little Matyasek who was diagnosed with a rare SMA type I disease when he was 6 weeks. We are therefore setting up this page for everyone who wants to read more about this disease and about Matyasek. When ordering other stuff you will be able to add a voucher for CZK 10, 20, 50 or 100 to the basket and thus contribute to Matyasek for paying all expenses associated with his illness.
Thank you! Monkey Mum.
Who is Matyasek?
Hi, my name is Matyas Exner. I live with my parents in Dvůr Králové nad Labem in the Czech republic. I was born as a completely healthy baby 12/26/2020 - such a belated Christmas present. My parents and my older sister were very happy with me. We entered the New Year as a complete happy family, but we had no idea that life would turn upside down. When I was 6 week old, my parents found out that I was suffering from SMA- spinal muscular atrophy type I. It was a big shock for them.
What exactly is SMA?
Spinal muscular atrophy is a genetic disease that affects the peripheral motor nerve (called the motoneuron), which is located in the spinal cord. The disease involves muscle damage, which is manifested by weakness and, in the later phase of the disease, loss of muscle mass, ie the so-called muscle atrophies.
The most common type of spinal muscular atrophy SMA type I (which I have) is also the most clinically serious form. The first symptoms appear in early infancy, no later than 6 months.
How did it actually start?
At the age of 5 weeks, our pediatrician noticed that I had little movement in my legs and I was not trying to lift my head, so she sent us to neurology, where the doctor performed an examination and sent us to the neurological center at Thomayer Hospital. They looked at me there, took genetic tests, and said the results would be in a few days. These days were hard, my parents hoped it would be alright and that exercise would help. They didn't know what to expect. When the doctor told my diagnosis to my mother and father, they could not believe it. They knew nothing about my illness, and suddenly it came to our lives. We are lucky in the misfortune in the form of Spinraz's medicine, it brought us hope. There was nothing to wait for, the cure that could stop the disease was like a small miracle. My parents did not hesitate for a moment and agreed to my treatment on the day they learned about the disease, because it is the best that the doctors can offer me.
The first available cure for SMA. The first three applications are after 14 days, the fourth after a month and then every 4 months. Spinraza does not cure the disease, but it stops spreading and the overall condition should not worsen. On the contrary, in combination with daily exercise, progress in mobility should be seen. The only downside is that it is applied to the cerebrospinal fluid.
What will I use the financial contribution for?
Each crown will be used for my treatment needs. Whether it is expensive rehabilitation stays or all the aids that will help me develop my skills.