Michael

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2 years old
Vienna, Austria

When we got the diagnosis at the beginning of October 2022, our world collapsed. I nearly lost my mind and needed support of all my family. We had always known something was wrong, just we did not know what. Before the diagnosis I said, “Whatever it is, please let it have a solution and be treatable”, and here we are. Our son is currently 26 months old and he is the cutest baby in the world. The road to a diagnosis is similar to others on this journey. 

At the age of 6 months, Michael had a bad kidney infection. He was in the hospital for a few days, and this was our first “excuse” as to why he was delayed in meeting his milestones. Later, we were again at the hospital at the age of  8 months for metabolic tests, blood and urine tests, simply to find out if there is anything wrong. We just found out that Michael is strongly anemic. This was our second explanation why Michael was still not crawling. We started doing Vojta’s method, and that was the worst experience for me, because my child suffered and cried in our hands. Doctors and physiotherapists told us to do so, that it will get better, but it did not.

At that time we lived in Prague, Czech Republic and decided to move to Vienna, Austria because of my partner’ s job. When Michael was 13 months old, I taught him how to sit. Then when he was almost 16 months old, we went to a hospital again for brain MRI, sono of internal organs, EKG, EMG, blood tests, and genetic tests Array CGH.

Everything came back negative. We were very happy. After some time we could get other genetic tests, tri-exome sequencing. And the rest is already known. The results came and I just cried and cried. I am still crying speaking about it. I always thought to myself that I am not that kind of mother made to be so patient, made to be happy from each little progress and here I am. My partner has unconditional love for us and is our great support. I hope, everyday, that the treatment and possibly cure will come soon. And I am really happy to know that there is a solution, there will be, and it will be soon. All my trust and hopes are focusing on that. I will never accept this disorder as a part of our lives, I will always fight with it. Before, we wanted to have 2-3 children. Now we are not able to speak about the second one.

Michael does not have epilepsy, yet. Maybe we are silently realizing some eye blinking. I forgot to mention that Michael’s neurologist died 1 month ago, so we have to find a new one who will help us and will study the disorder and possible treatment possibilities.

As of May 2023, we are at a 5-week rehabilitation center nearby Vienna, and Michael has started to walk. Today he made 10 steps alone. He cannot speak. He communicates via small gestures like open arms when he wants to get up, or he understands shorten versions of words meaning drinking, eating, breastfeeding, and sleeping.

Michael likes slides and swings. He laughs a lot and is learning how to drive a Bobby car. Michael is our miracle and even our trip to Paris has changed to life-long stay in Amsterdam, we will get used to it. He has a beautiful soul and face, and he will accomplish his best, I am sure about it. And we will all grow stronger.