Nieuws

"Marie was born on Valentine's Day. She was utterly perfect, but just a few days after her birth, things took a turn for the worse. Eight days after her birth, she was rushed to the emergency room in an ambulance, seized with convulsions. That's where the diagnosis of epilepsy was made. The seizures didn't stop with medication, and we were deeply worried.

When she was two months old, we received the results of the genetic analysis: a mutation in the STXBP1 gene. This genetic anomaly was discovered in 2008 and affects about 1000 people worldwide.

We gathered daily information from various sources and from other parents of special children, who had already achieved significant results. We also attended various courses. From all this emerged a combination of complementary therapies. In some countries, such as Denmark and the Netherlands, the costs are covered by health insurance. This is not the case in Belgium.
Thanks to this combination of effective therapies, we have achieved good results. Marie is now two years old and is starting to move around; every day she's getting better.

In March 2024, we started a new medication, Glycerol Phenylbutyrate (Ravicti), which could help Marie's brain function better. After just a few days, we noticed progress: Marie showed more emotions, it was as if she was waking up.

Unfortunately, we encountered the same problem: this medication is not covered by health insurance in Belgium. And the cost is high, beyond our means.

I got the name of the Linum Charity from a colleague and immediately sent an email. Now, with the support of Linum Charity, we can afford to pay for Ravicti for Marie for 5 months!

We are incredibly grateful!

Since the start of Ravicti, Marie's development has accelerated: she understands language much better, her motor skills have improved, her sleep has become fantastic. She started to show us when she likes something and makes a special sound when she's tired. Her mood and behavior have also improved significantly.
But the biggest change is a significant reduction in her epileptic seizures, which we never really managed to control. So she's much calmer and full of energy. We can now do her therapies more steadily, and we enjoy seeing her active and happy. Thank you very much for your support!"

- Parents of Marie