She is accompanied by the Björn Schulz Foundation. The charming girl from Berlin has a genetic defect CDLK5, which means severe epilepsy with eight attacks a day. Most children with this disease can’t speak, do not run, do not eat or drink and can only lie on their back.
Samantha is five years old.
The family does everything and goes far beyond their limits to enable Samantha a wonderful life. "Samy" in Berlin diligently goes to physiotherapy three times a week, as well as to hippotherapy, to ergotherapy, to promote early vision, to speech therapists and to a kindergarten with an integrative approach. There she can also play with other children, which Samy enjoys a lot. Besides, she is very fond of swimming. All these activities are necessary, so that Samantha does not lose the already learned by the epileptic seizures again.
Especially for the mother, who takes over the care completely, the daily life with Samantha is a tough job. It often brings her to the brink of her physical and psychological power. But - as she says - "a happy Samantha, a smile from her, or the pride when Samantha manages to stand alone, is both motivation and reward."
Through networking with other CDKL5 parents around the world, Samantha's parents have become aware of the "Footsteps Center" in Dorchester, Oxford, where some CDKL5 children have already been walking with the aid of the "Spider Therapy", which is widely unknown in Germany. At their own expense, Samantha's parents booked their first two-week session in December 2015 with the help of friends and donations. It was hard work and the training program was very demanding for Samantha. But it "clicked" and her next efforts to walk made great hope.
The Toni Kroos Foundation has therefore financed the follow-up therapy in June 2017. Samantha could again enjoy a three-week stay at the Footsteps Center Dorchester, Oxford, UK. And thanks to the therapy she is able to walk alone, a fantastic development!
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