Donation
For Ilai

HELP AND GIVE ILAI MORE QUALITY OF LIFE!

When Ilai woke up from his coma after his brain infection, he had to learn everything all over again. He was paralyzed, could no longer make controlled movements, speak, eat or drink. He had to fight his way back to life. A lot of things got better, but some deficits remained. It was like saying goodbye to life as we knew it. Being able to "be there" is very important to him and yet often not possible. Being able to go on bike tours together as a family again is a great wish.

ILAI'S LIFE

Ilai was a healthy kindergartener when he fell ill with influenza. The influenza triggered the ANE and he fell into a coma. Ilai recovered better than expected. The three months in rehab were very difficult. He suffered extremely from being separated from his brothers. He is a fighter and a cheerful person. Both have helped him to regain many skills. His speech is slurred and he has motor and mental deficits, but even today (4 years later) he is still making small progress. He can only attend school in the mornings because he tires quickly. He will probably always be dependent on help.

ILAI'S DISEASE

In ANE (acute necrotizing encephalopathy), a viral infection (usually influenza) triggers the immune system to overreact, resulting in a severe, sterile inflammation of the brain that is almost impossible to treat and damages the brain. The outcome is uncertain, from death (approx. 30%) to almost complete recovery (approx. 10%), anything is possible. Recurrence of the disease is also possible and probable in carriers of the gene mutation (RANBP2).

ILAI'S FAMILY THANKS YOU FOR YOUR DONATION

Despite everything, we hope that Ilai can lead as normal a life as possible. He is aware of his limitations and it means a lot to him to be able to do things just like his brothers, to be "normal". This special tandem is one of Ilai's greatest wishes. Doing things together, such as going on a bike ride, is good for the whole family, both physically and mentally.

We would like to thank you very much for your donation, which brings us a step closer to this bike.

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9'850 CHF
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out of 100 days left
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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) 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