Donation
For Louis

HELP AND ENABLE LOUIS TO MAINTAIN HIS ABILITY TO WALK

Louis is a very active child who can hardly sit still. He plays football, goes to scouts and tries his hand at Muay Thai - a type of Thai martial arts. Despite his birth defect and the associated limitations (bladder and bowel dysfunction and partial paralysis of muscle groups in his legs), he still walks on two legs. However, he often falls because his legs simply buckle. His feet are becoming increasingly deformed because he hardly walks on his flat feet any more. We very much hope that he will be able to walk for as long as possible. Daily exercises at home with a suitable vibration plate would give him this chance.

LOUIS LIFE

Louis was diagnosed with the rare birth defect spina bifida while still in the womb. On the very first day of his life, he had a life-saving 4-hour operation to close his "open back". The first few days were very challenging: administering medication, regular catheterization of the bladder, checking the baby's head in order to be able to intervene in time if hydrocephalus developed. Louis learned to walk despite his birth defect, but over the past few years we have increasingly seen his gait deteriorate despite weekly physiotherapy and aids such as orthoses. His feet are becoming more and more deformed and his tendons are shortening. It hurts to watch.

LOUIS ILLNESS

DISEASE - Spina bifida is an embryonic occlusion disorder in the area of the spinal column

SYMPTOMS

- Tethered cord (adhesions of the spinal cord)
- Functional disorders of the bladder and bowel
- Restrictions or loss of pain and touch
Sensation of touch
- Paralysis-related shortening and regression of muscle groups
- Varying degrees of flaccid, sometimes spastic paralysis of the muscles (paresis)

LOUIS FAMILY THANKS YOU FOR YOUR DONATION

We want to do everything we can to keep Louis walking for as long as possible as long as possible. At his last annual check-up, the doctor in charge doctor advised us to exercise Louis daily on a vibration plate Vibration plate every day.

We very much hope that Louis will be able to play football for a long time to come, which he loves to do, and that he will be able to enjoy his irrepressible urge to move on his two legs for a long time to come. We will work hard to achieve this - and we need your help.

On behalf of Louis, we would like to thank you for your donation!

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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 working on behalf of affected children and their families since 2014. We provide direct financial aid (CHF 1.8 million has been paid out so far), create free family events (more than 7,000 family members have taken part since 2014) to support the 670 affected children and their families Participants) to connect the 670 affected families from our KMSK network and anchor the topic of rare diseases in the general public (around 100 independent media reports in print, online, TV and radio in 2021/22). To make this possible in the future, we are dependent on donations, legacies and patronage contributions.

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