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Although fundamental, family support is often neglected. Families of children with rare and serious diseases are often left to themselves. We have also been there. We are here to help and guide you.
Although there is currently no treatment for MECP2 duplication syndrome, medical support addresses the symptoms and consequences of the condition. 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.
It allows for the assistance of parents and/or siblings during the diagnostic research or later during the evolution of the disease.
It allows stimulation and maintenance of the acquired motor capacities and the coordination of movements. It also helps prevent complications related to spasticity.
It helps to stimulate the muscles of the face to help swallowing and to manage hypersalivation. It also allows to work on verbal and auxiliary means of communication such as sign language and Metacom.
It aims to awaken children to their environment and help them become aware of their body. The therapies also help them learn to optimize the match between the child’s abilities and their environment.
The aim of this therapy is to prevent recurring problems with infections that are often very dangerous for patients with the syndrome.
It allows the strengthening of the internal muscles and the awakening of the senses.
MECP2 duplication syndrome is a rare disease whose symptoms evolve over the years. This makes it difficult for parents to keep up with care techniques. Sometimes parents learn these care techniques in conversations.
By sharing our experiences and tips, we would like to support families and help them live with the syndrome. Do not hesitate to contact us if you also want to share your experiences.
"When you are given the diagnosis, the doctors paint a very, very dark picture. And then as the days, months, and years go by, you realize that this black picture is punctuated by colorful spots...smiles, beautiful encounters, moments of happiness that you have to catch."
"When you are given the diagnosis, the doctors paint a very, very dark picture. And then as the days, months, and years go by, you realize that this black picture is punctuated by colorful spots...smiles, beautiful encounters, moments of happiness that you have to catch."