Although there is currently no treatment for MECP2 gene duplication syndrome, daily exercise remains very important in treating the symptoms and consequences of the syndrome. Affected children need to be supported and stimulated as much as possible in order to avoid complications, support their development and improve their quality of life.
We are pleased to share the stories of families around the world whose children suffer from MECP2 duplication syndrome and other rare diseases, and who support their children through rehabilitation centres. These stories are about bravery, determination and boundless love. Each story is unique, influenced by different experiences in different countries and by the specific challenges each child faces. They give us an insight into the realities of living with and managing a disability, and the important role that rehabilitation centres play in this journey. By sharing these stories, our aim is to create a global community, to inspire and to inform.
But first, let's define what a rehabilitation centre is.
A rehabilitation centre for children with neurological disabilities is a specialised facility that provides therapy for children whose disorders affect motor skills, cognitive abilities, communication and general development.
These centres bring together a multidisciplinary team of professionals, including neurologists, paediatricians, physiotherapists, occupational therapists, speech therapists, psychologists and social workers. Their collective aim is to maximise these children's functional abilities, independence and overall quality of life. The duration and intensity of therapy programmes may vary depending on the severity of the child's condition and individual goals.
Parents also benefit from psychological support at these centres. Contact with other parents facing similar challenges becomes a valuable part of their experience.
In addition, the rehabilitation centre offers parents a unique opportunity to spend quality time with their child, which is not always possible in the hustle and bustle of everyday life, marked by work, siblings and household chores. For parents, a rehabilitation stay is also a way of learning new techniques to stimulate and improve their children's skills.
While specialist centres for children with neurological disabilities do not exist everywhere, it is possible to access a range of rehabilitation services through hospitals, clinics, schools, community programmes or mobile outreach initiatives.
We invite you to read about the different experiences of four families who have recently stayed in rehabilitation centres with their loved ones.
Jan’s journey at Adeli (Slovakia)
Jan suffers from muscular hypotonia, which means it's difficult for him to learn to walk. The Adeli method, specially designed for children with neurological and motor problems, has helped him a great deal. The heart of the therapy is the Adeli combination, which has helped Jan to strengthen his muscles and take important steps towards walking.
Luzia's stay in Kokon
(Bad Erlach Austria)
Luzia is an extraordinary child. She has an unbalanced translocation between two chromosomes, a condition that is not widely described. Luzia's first experience of rehabilitation was a five-week stay at the Kokon centre (Bad Erlach, Austria). This was...
Leon's trip with the dolphins (Turkey)
Leon is 5 years old and lives in Germany. Last May, he had the pleasure of taking part in dolphin therapy for the second time. The dolphin therapy took place in Lara, Turkey, at the "mydolphins" centre. It is recommended to...
Ben's stay at Kokon (Rohrbach-Berg, Austria)
This year, Ben's rehabilitation took place in May at Kokon Rohrbach-Berg in Upper Austria. It's a great time of year to go for a walk in the fresh air, with less fear of infection. The therapists and staff were...
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