Donation
For Rayan

Help and give Rayan a better quality of life

Drazen and Zeynep's family happiness seemed perfect when their little son was born in August 2015. The first abnormalities became apparent at the two-month check-up and the young parents were referred to a neurologist referred to a neurologist. After further examinations, a genetic test and an MRI, Rayan's shocking Diagnosis: severe brain malformation. "We realized at that moment that we had a child who would need a lifetime of care that would need a lifetime of care. All our dreams were dashed in one fell swoop," his parents recall.

Rayan's story in the first KMSK knowledge book "Rare diseases" Link

Therapy for Rayan

Rayan is severely disabled and requires round-the-clock care. The little boy is affected by pachygyria and polymicrogyria, an early childhood damage to the cerebral cortex, Conexin 26, hearing loss and cerebral palsy. His parents are doing everything they can to provide their son with the best possible support in his development. They have now been recommended the ADELI method. It is designed to improve the quality of life and independence of patients with severe damage to the central nervous system. For Rayan's parents, the method is a great ray of hope.

Rayan's family thanks you for your donation

"We love Rayan just the way he is and only want the best for him," emphasizes his mom. In order to support him on his rocky road and to be able to offer him the best possible therapies, the young family the young family relies on our help. This is because the ADELI method is too expensive for Rayan's parents; health insurance and IV do not contribute to the costs.

How exactly does the ADELI method work? The special feature of the method is primarily the use of an astronaut suit. During exercises such as walking, the suit transmits stronger Signals are sent from the movement system to the brain and stored there stored there. This allows the brain to retrieve the necessary signals and learn movements that were previously impossible were previously impossible.

Help us so that Rayan can benefit from this method and be optimally supported in his development. Rayan and his family thank you from the bottom of their hearts!

Thanks to donations and generous benefactors, Rayan's Adeli therapy (CHF 8 000.-) could be financed as of 3.12.2020. We thank you from the bottom of our hearts!

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Would you also like to start a crowdfunding project?

Are you registered in our KMSK Family Network and would like to improve the quality of life of your affected child with the help of crowdfunding?

We support you and offer you our platform to realize your crowdfunding project in just a few steps. Click here for the registration form: Link

Support association for children with rare diseases
Around 350,000 children and young people in Switzerland are affected by a rare disease.

Everyday life for these families is characterized by uncertainty, especially when there is no diagnosis yet. The Support Association for Children with Rare Diseases has been committed to helping affected children and their families since 2014. We provide direct financial support, create free family events (more than 2,200 family members were able to take part in 2019) to connect affected families and raise awareness of rare diseases among the general public. We rely on donations, legacies and patronage contributions to make this possible in the future.

Link KMSK donation flyer