Rare genetic defect – Hannah: A sweet sunshine needs help

MEF2C is the name of the genetic defect with which Hannah was born. The parents were explained as the “mood of nature” because none of them is a carrier. A very annoying mood. Because the syndrome causes violent consequences, serious suffering, a normal life prevents in every respect.

Hannah is four years old. She laughs delicious – but completely by the other person. Nobody knows how to see others. Hannah has autistic characteristics, her development is slow, she cannot speak, not go, has epileptic seizures. 100 per day in very bad times.

Only 450 people worldwide affected
And the prediction does not encourage. Only 450 people worldwide (!) If the parents know from their research that this syndrome influences. An 18-year-old speaks sentences that are two words long. The others nothing at all. “From going a little to a wheelchair, everything is possible,” say the parents, who tear away the “floor under your feet” at the diagnosis. But of course they do everything for their beloved daughter. And therefore try to find money with all your power. Because – a medicine is being developed that can help Hannah and her co -plumb enormously. “But because a few are being hit, it is not permitted without further research,” the parents said. And the investigation should pay that have been affected …

There are also high costs for the family that cannot be lifted alone, such as the renovation of the apartment to the needs of Hannah. If you want to help, you can under this account number: “The Crown helps”, AT152081500044569523. KW: Hannah