Donation
For Luca

SPECIAL BIKE FOR LUCA: ENABLE FAMILY OUTINGS AND A BETTER QUALITY OF LIFE

The path is different than expected. Luca is strong as a bear, almost always on the move and hardly ever rests. After more than a thousand sleepless nights, numerous examinations and suspicions, after many exhausting crying fits from Luca and after the diagnosis, Luca's development is very slow. Luca needs more time to be able to develop, and Luca may never reach some developmental stages. Thanks to the special bike, Luca gets a bit of light-heartedness, freedom and a sense of belonging from his special journey through life. Integration instead of isolation!

Luca's life

Luca was born on 12.06.2013 as a stargazer and weighed 3340 grams and measured 51cm. A sugar-sweet baby. Actually quite normal until I started breastfeeding. Luca had great difficulty sucking and swallowing and couldn't drink from the breast. He cried so much, sweated so much and no one could give me an explanation for his abnormalities. After every meal, Luca vomited everything in a gush. The first clear deviation observed in Luca at around six months was delayed motor development, muscular hypotonia and speech delay. My desire as a mother to finally find out what was wrong with Luca grew stronger and stronger. And suddenly I came across the term Angelman syndrome. After about a week, the results of the blood test came back and it was clear that Luca has Angelman syndrome. Please help to give Luca this unique opportunity and experience to improve his quality of life (picture above: Luca during the test drive).

Lucas illness

Luca was confirmed to have Angelman syndrome following a molecular genetic test. This is a rare, genetic disease. Both boys and girls are affected by this rare disease. There is no cure for Angelman syndrome, but physiotherapy, for example, can promote development.

Symptoms with Luca
- Severe functional developmental delay
- Seizures
- Microcephaly, head tremor
- Impaired coordination
- Hyperactive, hyperactive behavior
- Laughing fits

Luca's family thanks you for your donation

Luca loves being out in nature and going on outings with his siblings. The special bike will give Luca red cheeks, freedom, wind in his hair and a real zest for life. Luca is very active and wants to pedal along. The pedal cure unit can be switched on or off. Luca trains his muscles and can take part in social life with his family. So it is also therapeutic. Please help to give Luca this unique opportunity and experience to improve his quality of life.

On behalf of Luca, we would like to thank you very much for your donation.

103%
10'268.78 CHF
of 10'000 CHF
0
days
out of 49 days left
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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 committed to helping affected children and their families since 2014. We provide direct financial support, create free family events (around 6,200 family members have been able to take part since 2014) to connect affected families with each other 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