You certainly remember Pia, this baby whose story moved the whole of Belgium. A little girl with spinal muscular atrophy, a rare disease that required very expensive medicine. A fundraiser had also been organized to finance his treatment. Today, Pia is 3 years old and she is doing better. She has even just received an electric car to be able to move around.
Her parents enrolled her in the Go-Baby-Go project at Vives University of Applied Sciences. The latter designs 10 custom-made electric cars each year for children with disabilities.
“Of course she’s not able to exert pressure with her foot so she can’t press an accelerator. So they made a sort of button on the steering wheel which is very sensitive so she can touch it. and herself with her hand. That way she can speed up and move around. It’s fantastic that they’re doing something like that.” rejoices Ellen De Meyer, Pia’s mother.
In October 2019, the then 10-month-old girl received treatment thanks to a major fundraiser that enabled her parents to raise nearly 2 million euros, the price of an injection. Today, Pia was able to go back to school.
“She loves going to school and is doing well, but we noticed there was a bit of frustration as she can’t do much at the playground”, confides the mother. “The other children play with bicycles or tricycles.”
If Pia has progressed well since her treatment, medical supervision is still necessary. “We continue to cautiously hope that even more is possible, that she will be able to stand independently for example and we continue intensive physiotherapy treatments. There are also a lot of exercises to have more strength in the legs”, also indicates Ellen De Meyer.
In Belgium, since December, the treatment received by little Pia is reimbursed for children up to 2 years old or under 13.5 kg.