Donation
For Simea

HELP AND GIVE SIMEA A SPECIAL BIKE

Simea loves to exercise, but walking is becoming increasingly strenuous due to her movement disorder. That's why she loves cycling or speeding around in her go-kart. She is an upbeat girl and (almost) always cheerful and smiling. Because her muscle strength and coordination are declining, it is becoming increasingly difficult for her to ride a bike herself. With a special tandem, the whole family can go on outings together again and enjoy carefree moments.

SIMEAS LIFE

Simea's start in life was unremarkable and completely normal. When she started walking, she had unspecific symptoms with her unsteady gait. From the age of two, many tests began and over time other symptoms were added, so that after three years of uncertainty, a genetic test diagnosed Louis Bar syndrome. However, this does not stop Simea from enjoying her life with a lot of cheerfulness, heart and a dose of cheekiness. She loves being out in nature, loves animals, enjoys cycling and would love to eat a Schoggi Cornet every day.

SIMEA'S ILLNESS

Louis-Bar syndrome (also known as Ataxia Teleangiectatica) is a severe, progressive, very rare hereditary disease. The altered ATM gene is located on chromosome 11 and is the cause of the variety of symptoms of the syndrome. Damage to the cerebellum causes a movement disorder and progressive problems with coordination. In addition, in most cases (including Simea's) there is an immune deficiency and a very high risk of developing cancer in the course of life. There is no cure for Louis Bar syndrome and life expectancy is 20-30 years.

SIMEA'S FAMILY THANKS YOU FOR YOUR DONATION

We enjoy our time with Simea and her big sister, but it is not always easy to see the progression of the disease. Simea is a ray of sunshine and we want to experience many more wonderful moments with her. We would love to fulfill her wish to ride her bike again. However, the disability insurance classifies a special bike as leisure equipment and therefore does not pay for it. Pedaling along on the tandem would train her muscles and help her maintain her strength for as long as possible. Thank you for enabling Simea to put a smile on her face with the special bike.

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

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Would you like to start a crowdfunding project as an affected family?

Are you registered in our KMSK Family Network and would like to use crowdfunding to give your affected child (up to the age of 18) a better quality of life?

We are happy to support you and offer you our platform to realize your crowdfunding project in just a few steps.

There are no costs for you and we will cover the bank charges so that the target amount is paid out without any deductions. If the target amount is not reached, we will pay you the amount raised in the 100 days.

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 affected 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 support (CHF 2.2 million has been paid out to families so far), organize free family events (more than 7700 family members have taken part since 2014) in order to raise awareness of rare diseases Participants) in order to connect the 715 families in our KMSK network with each other, impart knowledge about rare diseases to (newly) affected families, specialists and the media.

We rely on donations, legacies and patronage contributions to make this possible in the future.

Link KMSK donation flyer