With heart for Matyášek

Here it is. After we raised 5,000 CZK for the Indian girl Diya for school fees, we started looking for another "victim" who could be helped by a few extra crowns from us and our customers.

We received a tip about the amazing family of little Matyášek, who was diagnosed at 6 weeks of age with the rare disease SMA type I. So we are creating this page for everyone who would like to read more about this disease and about Matyášek. When shopping, you will be able to add to your cart a voucher for 50, 100, 200 or 500 CZK and contribute to Matyášek's expenses related to his illness.

Thank you! Monkey Mum.

Who is Matyášek?

Hi, my name is Matyáš Exner. I live with my parents in Dvůr Králové nad Labem. I was born as a completely healthy baby on 26/12/2020 - a delayed Christmas present. My parents and my older sister were overjoyed with me. We stepped into the New Year as a complete happy family, but we had no idea that our lives were about to turn upside down. For my parents, it was a huge shock when, at 6 weeks old, they learned that I suffer from SMA - spinal muscular atrophy type I.

What is SMA, actually?
Spinal muscular atrophy is a genetically determined disease that affects the peripheral motor nerve (the so-called motoneuron), which is located in the spinal cord. The disease affects the muscles, which manifests itself as weakness and, in later stages of the disease, also loss of muscle mass, i.e. so-called muscle atrophy.
The most common type of spinal muscular atrophy, SMA type I (which I have), is also the most clinically severe form. The first symptoms appear in early infancy, by 6 months at the latest.

How did it all start?
At 5 weeks old, our pediatrician noticed that I had limited movement in my legs and wasn't trying to lift my head, so she sent us to a neurologist, where the doctor examined me and sent us, just to be safe, to the neurology center at Thomayer Hospital. There they examined me, took samples for genetic testing, and said the results would be ready in a few days. Those days, when my parents hoped everything would be okay and that exercises would help, were difficult, but they still didn't know what was waiting for them. When the doctor told my mom and dad my diagnosis, they couldn't believe it. They knew practically nothing about my disease, and suddenly it had entered their lives. Finding out that we were lucky in misfortune in the form of the drug Spinraza gave us hope on an otherwise very bad day. There was no time to wait, and the medicine that can stop the course of the disease was a small miracle. My parents did not hesitate for a moment and agreed to my treatment on the very day they learned about the disease, because it is the best thing the doctors can offer me.

The first available medication for SMA. The first three doses are given 14 days apart, the fourth after one month, and then every 4 months. Spinraza does not cure the disease, but it stops its progression and the overall condition should not worsen. On the contrary, combined with daily exercise, progress in mobility should be visible. The only downside is that it is administered into the cerebrospinal fluid.

What will I use the financial contribution for?

Every single crown will be used for my treatment needs. Whether it is costly rehabilitation stays or any aids that will help me develop my abilities.