My name is Helene and my son is Chrisjan. He is 13 and has been diagnosed with Ehlers-Danlos Syndrome hyper mobility. I have two children – my daughter is 15 and a wonderful child. Straight A’s in school since grade one. Chrisjan has been a bit difficult. Both my children were prem babies, with my daughter arriving at 33 weeks and son at 36 weeks, this due an incompetent cervix and #CervicalCancer. In 2009 their father passed away from White matter disease (early onset Alzheimer). We
moved to Durban so I could work and have my children taken care of. In early 2011 Chrisjan showed signs of #ADHD and we had him assessed and it was confirm
ed. He is on medication for ADHD and depression as well as sleep disorder. In 2015, just after I remarried, I had to stop working as Chrisjan struggled a lot with eatingand muscle wastage.
Due to not having medical aid we turned to the government hospitals for help and they did all the tests you could think of from MRI to EEG and ECG to numerous blood tests;and eventually we found out in November 2016 that he has EDS. He has been stopped from playing all sport in 2015 already and he loves his sport so much. In October 2016 my husband had a seizure and was paralyzed on his left side. He lost his work due to it – at least he can walk now, but he has a heart condition which is still under investigation and has been diagnosed with #FunctionalNeurologicalDisorder. I have been looking for work but it has not been easy.
Chrisjan also has a small heart(equivalent to a 7 year old) and struggles some days in simple tasks. He has hurt himself twice where he needed stitches, once in his index finger (for this he had to undergo anesthetic) and once he cut open his left palm.
Amidst all that my son is a happy and content child. We have now started investigating into why he is unable to eat properly and is severely underweight. He
only weighs 30 kg. He walks around with a bit of difficulty; his left knee is aching a lot as they said the cushion is warn through. His right ring finger is in a bent position and he cannot straighten it which causes problems when he writes. He is brave as he seldom asks for painkillers, only when he has a migraine. Puberty has not hit him yet which is what I am afraid of in the near future. This is a short version of our story. I am so proud of my son.