In September 2019, the Belgians had been touched to the heart by the story of little Pia. The girl, then 8 months old, suffers from spinal muscular atrophy, a very rare genetic disease that prevents the proper development of muscles. To try to heal, Pia had to be injected with Zolgensma, the most expensive medicine in the world. A treatment from which she was able to benefit in October 2019 thanks to a surge of generosity, since a large fundraiser had raised 1.9 million euros.
Today, almost two years later, little Pia’s mother, Ellen De Meyer, gave her news to Het Laaste Nieuws. “When asked how she is, I always answer in two steps. She’s doing very well when you think about where she’s from. There was a lot of chance that she couldn’t even reach a day like today or that she was on a ventilator or tube fed all the time. The drug works, it allows him to use some of his muscles “.
Thanks to this treatment, Pia will therefore be able to return to school for the first time in September. The girl recently visited her future class. “She was a bit out of her element when we visited the classroom with the teacher and the kids last week. For a moment she was speechless, which does not happen often. But she is very sociable and very quickly the children came to show her what toys she can play with after the summer. Everything will be alright”
Pia, now two and a half years old, is still unaware of her condition. “She’s not asking any questions at the moment and later we would like to tell her the whole story of how she is different from her classmates. Awareness is not yet on the agenda, but it will come soon. She’s a smart girl and she talks all day. It won’t always be easy to answer her questions, but the fact that she can get to school in her wheelchair is already a victory.“.
The little family are expected to leave their home in Wilrijk, near Antwerp, soon to move into a quieter environment in Lier.
–
