At the beginning of 2013 he was diagnosed with a metabolic disease that are still tested for which one. This might be the cause of his apnea that returned om 2012 Currently he is on a si-pap machine during the night that is doing 88% of breathing.

His is on chronic medication for his lungs, reflux , ADHD and brain-injury as well as for chronic stool softening.

The beginning of 2015 we started with tests and treatment to resolve his stool-incontinence. So far there is no specific cause. He is struggling with severe consipation and started on double the dose for adults. With that we managed to get him most of the time going on the toilet, but he is still not telling us when it is time. So there is still dirty pants/nappies.

His apnea is still a concern as it is not really stabilising and his settings on the machine needs to be adjusted every six months.

With a monitor we discovered that he is now hypoventilating( swallow breathing to skip of breaths) and also starting have a very high heartbeat.

We saw a Geneticist they suspects he might be suffering from a rare autoimmune disease or there is a genetic cause for his condition. The first test was inconclusive. He was however diagnosed with Dys-automomia that is explaining why his breathing is sometimes very shallow and his heart-rate is fluctuating. He also is diagnosed with a hypermobility syndrome and for that we must follow up with a Rheumatologist.

He is also not picking up weight and starting to lose muscle-mass.

He is attending Meerhof school for children with disabilities.

2019 he started to get very tired and have to be fetched from school earlier or only attending school 3 days a week.

However keeping up with all his medical expenses is an ongoing battle. (R80 000 – R100 000 per year that is not covered).

He is on 9 different medications helping him through the day and maintaining his function, costing alone R6000 per month for hronic medication

meal-replacement drink( frebini/pediasure), glasses etc .