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Pierre from Austria

The Nagy family – We are Phil (1988), Lari (1996), Louie (2020) and Pierre (2021).

We are originally from Heilbronn in Baden-Württemberg, but have lived in Austria near Linz since 2019. Our second son Pierre stood out immediately after his birth due to his extreme muscle weakness. He couldn’t breathe or swallow on his own. He was therefore later given a tracheostomy and a PEG tube for feeding. Over time, he developed hydrocephalus, which is why he was also given a shunt.

It took a few months before we found out the reason for his weak muscles: Myotubular myopathy (MTM1).

He struggled in hospital for many months until he was finally able to come home to us in January 2022. Since he has been home, he is doing much better and has made small progress.

Family photo in the sunshine with dad Phil, Louie, Pierre in the car and mom Lari in Austria
Family photo in the sunshine.
Louie is standing next to the car with his brother Pierre and the ventilation and monitoring equipment.
Louie is standing next to the car with his brother Pierre and the ventilation and monitoring equipment.
Dad Phil, Pierre in the stroller, Louie on mom Lari's arm for a family photo in the garden.
Dad Phil, Pierre in the stroller, Louie on mom Lari’s arm in the garden.
Pierre and brother Louie lie on a mat and laugh into the camera.
Pierre and brother Louie lie on a mat and laugh into the camera.
Selfie on vacation with the whole Nagy family.
Selfie on vacation with the whole Nagy family.
Pierre with MTM1 genetic defect with his big brother Louie on a swing in the garden.
Pierre with his big brother Louie on a swing in the garden.

Since then, we have traveled a lot and really enjoy being able to travel as a complete family. We have already visited our families 500 km away from home several times and have even been able to go to the seaside in Italy. At first, we didn’t think it was possible to do everything with a ventilated child.

It was very good for us to find the ZNM -Zusammen Stark! e.V. association after the diagnosis. It enabled us to get to know other people who had been through similar things. This gave us a lot of hope and courage.

Mom Lari is involved in our self-help association in the PR + Marketing working group and fills our channels on social networks. Dad Phil works in the research department of ZNM – Zusammen Stark! e.V.

Status 2023