Our Heroes: Prokop family

Prokop family: We are Jeannine, Michael, Emma (4) and Ben (1). We will soon be moving to Upper Austria to offer Ben better medical care and a suitable place in kindergarten. We're lucky enough to have our whole family behind us and to be actively involved in the life of the association.

My name is Jeannine and I'm an ambassador for "Lasst uns MDS heilen - DupMECP2". It's important to show that the association exists and thus enable our children to have an unrestricted future. I want to support the families and show them that this journey with MECP2 duplication syndrome is not an obstacle.

Life is incredibly colourful and wonderful. Together we can achieve more than we can individually.

When Ben was born in June 2022, everything seemed normal, but after a few months it became clear that he wasn't developing properly. With each infection, he lost the developmental milestones he had acquired. He suffered from constant pneumonia, aspiration and required constant oxygen support in hospital, as well as antibiotics. His poor health worried us enormously and ruled our whole lives. We spent months in hospital.

The doctors at Mödling were also very concerned and ordered a genetic test. In April 2023, we received the diagnosis, which was a great shock but also an explanation of what Ben had. Then it was time to reorganise our lives and digest so much information.

Contact with other people with the same condition, particularly David and Ana, helped me to find a way of coping with the diagnosis. Many thanks to them for that.

Our Ben is a bright boy who likes to be at the centre of things. He likes playing hide-and-seek with his older sister and reading books. He is very interested in his environment, which is a great advantage in therapy. He communicates very clearly through his body language and has a strong desire to continue developing.

He's a little ray of sunshine and a formidable fighter. We are infinitely grateful to have him and will do everything humanly possible to support him.