Donation
For Kerem

Help and make Kerem's heart's desire come true

Kerem's genetic defect in the ALS2 gene is a physical impairment that prevents the correct control of all four limbs and muscles because the nerves are not transmitted correctly from the brain to the body. It is degenerative but does not affect cognitive development. Kerem is unable to walk freely, sit independently and it also restricts his speech. Until he was 2 years old, Kerem was still able to walk partially with a walker, but has since lost this ability. Kerem is dependent on 24-hour care from us parents for all activities (care, eating, changing, transfers, getting around, etc.).

Making everyday life easier for Kerem

A customized care bed for Kerem will support him in daily care, positioning due to the hip reconstruction (2nd surgery pending for summer 2022), dressing and undressing as well as in the correct positioning to alleviate muscle spasms during the sleep/relaxation phase. Picking up and lying down will be much easier for us parents because the care bed can be raised to reduce bending forward and thus protect the back (due to Kerem's size and weight). We parents will also be better able to help Kerem get dressed when he is practicing his independence.

Kerem's life

Kerem developed according to his age until he was 15 months old. However, doubts soon arose when Kerem was still unable to stand or walk freely at the age of 1.5. Various tests diagnosed a degenerative nerve disease due to a genetic defect. The first few months were difficult for us as a family to accept the situation, with many emotional low points, combined with an administrative jungle and organizational stress. Many therapies and check-ups had to be undergone, the "high point" was a complete hip reconstruction on both sides in January 2020, which robbed Kerem of a great deal of strength and ability.

Kerem's illness

Kerem suffers from infantile hereditary spastic paraparesis. This is a nerve disease that is diagnosed in around 1 to 10 in 1,000,000 people.

Symptoms in Kerem
- Physical impairment of all four limbs & muscles
- Eating and swallowing problems

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9'550 CHF
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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 1.5 million has been paid out so far), create free family events (more than 6,200 family members have taken part since 2014) to support the 650 families affected Participants) to connect the 650 affected families from our KMSK network and anchor the topic of rare diseases in the general public (around 60 independent media reports in print, online, TV and radio in 2021). To make this possible in the future, we are dependent on donations, legacies and patronage contributions.

Link KMSK donation flyer