Dominik was born April 1, 2015 and the beginning of his life was very tough. 

Immediately after giving birth, he had to be resuscitated and then transferred to another, better-equipped, hospital. Dominik was really a small baby (2370g), but very strong from the beginning so everything turned out well, if only for a moment.

After two weeks, we left the hospital with the first diagnosis of hypotonia. We started with Vojta-Therapy.

At two months old, the pediatrician alerted us to twitches in his arms. We went to neurology, where Dominik was diagnosed with epilepsy. He received drugs that help him with epileptic seizures, but also hampered his development.

As life went on, Dominik had his ups and downs and we still had no idea what his true diagnosis was. We spent a lot of time in the hospital and waited a long time for the results of genetic tests.

When Dominik turned one year old, we finally got the genetic tests back. 

Dominik has a genetic defect in the GRIN1 gene that causes his epilepsy, severe intellectual disability, muscle hypotonia, visual and hearing impairments, and so much more. It was a blow, but we finally knew why it was all happening.

During this time, Dominik also need a PEG inserted into his stomach because of feeding problems and vomiting. Due to frequent vomiting, he had to undergo a gastric fundoplication in 2017.

At the beginning of the 2019, Dominik got severe pneumonia and had to be intubated. These times were so hard, but as I said at the beginning, Dominik is a very strong child and fought successfully with all his might.

He continued to receive very strong drugs, which made him stop digesting. So instead of PEG he got a PEG-J inserted. We were in the hospital for six months at this time. It was endless.

In the same year, doctors noticed that Dominik was finding it harder and harder to breathe. He slept most of the day. He devoted all his strength only to breathing. He was so exhausted. Doctors offered us a tracheostomy.

Even though it was the hardest decision ever and I was so scared, I’m so happy, in retrospect, that I agreed to a tracheostomy. Dominik’s stomach started digesting again, so he’s back on PEG. He has more energy now and he smiles a lot. Although we could not continue with Vojta’s therapy because it caused him an epileptic seizure, Dominik regularly rehabilitates several times a week.

I’m so glad we connected with other people who have children with the same diagnosis. There are good and bad days, but we always know we are not alone and sometimes it’s all we need.