On the run with the Duchenne

Story of Ivanna, fleeing Ukraine with her seven-year-old son, Max, who has Duchenne muscular dystrophy, and her other two-year-old son, Mark. They found a welcome in Prague, thanks to the international mobilization of Duchenne patient organizations.

“The children ask me when they will be able to go home to their grandparents and their fathers. When they can get back to normal”. These are the words of Ivanna, a young Ukrainian woman welcomed to the Czech Republic with her two children Mark and Max, aged 2 and 7. Max has Duchenne muscular dystrophy, a rare genetic condition that involves the progressive degeneration of the muscles.

Max is a silent, attentive child. He goes from room to room at Motol University Hospital for checkups and rehabilitation. He hints at a few smiles, but he gives loving glances to his mother and younger brother he takes care of. His gaze tells of a childhood that is struggling to express itself in this historical moment. He shyly emerges only when his little brother asks him to play in the hospital lobby imagining he is in a playground. Imagining a magical place in a completely new environment for them.

Ivanna traveled hundreds of kilometers arriving in Prague with her children to save them and to ensure the clinical care of little Max. A new life, without loved ones and in a country they don’t know.

“We welcomed Ivanna’s family and provided them with everything they could need,” says Karolina Podolska, member of Parent Project Czech Republic, a Duchenne patient organization in the Czech Republic. “We found temporary accommodation, collected clothes, organized the clinical care of the child within our center specializing in neuromuscular pathologies, the Motol University Hospital. We try, every day, not to make her mother and her children feel alone”.

There is a whole community that gathers around a family that is fleeing the drama of the war with an even greater concern dictated by the management of a complex pathology. Children and young people with Duchenne muscular dystrophy, as well as for other neuromuscular pathologies, in fact need movement and breathing aids, regular rehabilitation exercises and the intake of medicines. It is a very complex path that takes on even more complicated tones in dramatic contexts such as war.

For this reason, the World Duchenne Organization has activated a specific plan within its DMD Emergency Program that provides support for families who have remained in Ukraine and for patient organizations that welcome them in many European countries . Just like in the case of Parent Project Czech Republic and Ivanna’s family. “Social media allowed me to immediately get in touch with the family association and I found a lot of support,” says Ivanna. “They are a concrete answer to the difficulty.”

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