Who is Daan?

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 dreamt of becoming a drummer and loved playing the X-box with friends. Daan was a member of the drum band in Born and was Limburg Champion in 2017. He used to be a young, sporty boy – because everything turned out differently. Two years ago, during his early puberty, Daan´s health started to deteriorate. He is more and more dependent on his parents instead of the other way around, like most children in their teens do. At the moment, at the age of 13, he has had to adjust his dreams several times.

Wie is Daan?

Physical complaints

Whilst in group 7 of primary school, the first physical complaints such as dizziness started to appear. In the past two years, he has been examined by various specialists, which included tedious examinations in various hospitals. In the meantime, the complaints were getting worse. Daan had to recover for a few days from every exertion done and was very dizzy whilst standing straight. He told the doctors his head felt blurry, something called ´brain fog´. He was also finding it increasingly difficult to concentrate. Even right after waking up in the morning, he felt like he had just run a marathon. The doctors could not find the cause of all this and as a result, Daan was still seen as a ´healthy young boy´. Daan´s parents however thought otherwise as their son was not able to go to school anymore, nor to play the drums or football and meet friends. The will to do so was certainly there, his body however simply could not take it anymore.


The doctors who examined Daan could not explain his complaints and proposed to start a rehabilitation process. This process would contribute to his recovery and reduce physical complaints. Before this rehabilitation process started, a paediatrician made sure Daan and his parents came to a Professor Cardiologist who performed a tilt table test to measure the blood flow to the brain. This test showed that Daan has Orthostatic Intolerance (OI). This means Daan is allergic to gravity as too little blood flows back to his brain when he is sitting or standing up. Your blood flow is regulated from your autonomic (meaning independent, involuntary) nervous system. This nervous system automatically regulates almost all unconscious functions and processes in your body such as your breathing, heart rate, blood pressure, blood circulation, energy production, digestion and metabolism. You do not have to think about such functions and therefore cannot be trained. Next to OI, the diagnosis of Myalgic Encephalomyelitis (ME) was given. ME disease can be triggered because the cranial nerve and brainstem are affected by Cranio-Cervical Instability (CCI) and Atlanto-Axial Instability (AAI), something his parents would not find out until later.

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



Due to the progressive nature of ME and OI, Daan is lying in bed for more than 23 hours a day. His world is small and his life standing still. In addition to the severe fatigue in his body, he suffers from headaches, neck pain, stimuli, poor concentration, tremors, difficulty swallowing, blurred vision, little focus and no energy. Sounds also come in differently and loud noises hurt, he can no longer sit properly without becoming ill and he suffers from Post-Exertional Malaise (PEM). After every physical or cognitive effort, his complaints are worsened which results in him having even more difficulty tolerating stimuli. This deterioration can last for days, weeks or months. He needs the help of his parents in almost every act. All of a sudden, his future looks very different. His physical strength is still decreasing rapidly, the muscle strength in his body is decreasing whilst the neurological complaints are increasing.


On various forums and via fellow sufferers, Daan’s parents read about CCI/AAI. This is a condition in which the bands of the upper cervical vertebrae are too weak, causing shifts to take place. This is a rare complication of the connective tissue disease (double-jointed) Ehlers-Danlos Syndromes (EDS). The symptoms of this disease are the same as the complaints Daan experiences. In the spring of 2020, Daan received a sitting MRI in Hanover, as this method is not possible in The Netherlands. Unfortunately, the scan´s images are too poor to assess. Daan´s parents had two options: they could either take him to England for a new seated MRI scan or to Barcelona where they could have the examinations and images immediately assessed by the appropriate doctor (Dr Gilete, neurosurgeon). They rented a camper so they can transport Daan safely and horizontally because sitting is no longer an option. In Barcelona, the new images indeed show that he does have CCI and AAI. There is also a strong suspicion that Daan has double-jointed EDS. Although there have been added new diagnoses, there is prospect again because with surgery the weak vertebrae can be securely held in place. The health insurance does not reimburse this operation because Daan has CCI, AAI in combination with double-jointed EDS and ME and there is no Dutch DBC-code yet. The Dutch Diagnosis Treatment Combination-code is the average of all healthcare costs associated with a particular treatment and therefore needed for the health insurance. Due to the lack of this code, the operation cannot be performed in The Netherlands nor does the insurance reimburse the costs. The Leiden University Medical Center (LUMC) will soon start a study in this matter to help sufferers in the future. As there is no time to waste, Daan´s family decided to set up crowdfunding to finance this operation to give Daan a future again.