Give Daan a future

Daan, a 13-year-old boy, suffers from the rare condition CCI and AAI; a structural instability of the joint connecting the skull and neck.

Daan is bed-ridden for more than 23 hours a day. In addition to the severe fatigue in his body, he suffers from headaches, neck pain, stimuli, loud noises, little concentration, trembling muscles, difficulty swallowing, blurred vision, little focus and lack of energy. The muscle strength in his body decreases and the neurological complaints increase. His world is small and his life standing still.

Help us fund Daan´s recovery and give him a future

Help us fund Daan´s recovery
and give him a future

DONATE

Lifesaving surgery

Daan used to be a young, sporty boy with a bright future ahead. He had an active social life with friends, played football and enjoyed going to school. He used to be, as he developed various physical complaints two years ago. As a result, he is bed-ridden for more than 23 hours a day.

His illness, CCI and AAI, affects his vital functions and this can only change through a surgery. In Europe, this is performed by only one neurosurgeon: Dr Gilete from Barcelona. Unfortunately, this surgery is not reimbursed by the health insurer. Therefore, the foundation Samen voor Daan has started this crowdfunding. We hope to be able to fund Daan´s life-saving surgery in Barcelona.

Rare disease

In the rare disease CCI and AAI, the bands that hold the upper cervical vertebrae in place are too weak and this results in causing shifts. These shifts trap the nerves and put pressure on the brain stem. This again causes the autonomic nervous system to be disrupted. All vital functions of the body are controlled from this nervous system, such as heart rate, blood pressure, respiration and digestion.

Daan and his parents have spoken with fellow sufferers who have similar complaints. Some of them already had the surgery and are experiencing a significant improvement in quality of life.

The surgery

The surgery is now planned in the first quarter of 2021. It is expected that the number of COVID-patients will increase due to the upcoming holidays, so a definite date can only be set a short time before the surgery.

On this website, we will keep you informed about the examinations, the operation and Daan´s recovery.

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