Danicke was born a normal, strong healthy baby and 9 months later in November 2011 she had her first “episode”. We refer to it as an episode as no one is able to diagnose her situation. After a week in hospital it was established that her right side of brain was in a permanent state of epileptic fit and it was as if she had a stroke because it left her with a paralyzed left side of her body. She w
as stabilised and started to recover by learning to drink and eat and sit all over again. A few MRI and EEG scans later showed that "IT" (whatever it was) left her with permanent brain damage. She was getting stronger and doing well when in October 2013 she had the second "episode", which was worse than the first but this time on the left side of her brain. According to her neurologist, Dr Lippert from Unitas in Centurion, it is as if her brain shuts down and resets after a couple of days. This time she was left paralyzed on the right side of her body and could not swallow and she could hardly move. She will be 6 next year and still does not have full function of her right hand and she is unable to talk, walk and do what every other 5 year old should be doing. She is such a friendly happy child with such a precious nature that you cannot help but love her! After the last episode, Dr Lippert advised that, despite not knowing Danicke’s exact diagnosis, every measure needs to be taken to prevent another episode from occurring as it could be fatal. The reason for this is that her little brain may not be able to handle another "re-setting". This has got to be the most difficult thing to prevent as how does one prevent something from occurring when one doesn’t even know what the cause of the “episode” is? Whilst mommy and daddy are doing everything they possibly can to assist their little Danicke, the financial strain, as you can imagine, also takes its toll. As Danicke gets older, she gets heavier (18kg currently) and requires more involved attention. Hanno and Yolanda's first wish would of course be to get an answer for what is causing all of Danicke's problems but, they are hopeful that they will get there one day by one step at a time. Mommy and daddy never stop researching Danicke’s “condition”. They have located a specialist in Germany who will conduct very in depth tests on Danicke’s blood to try determine whether this has stemmed from genetics or whether something physical is to blame. These tests however are incredibly expensive, and the Jantzen’s can do with every bit of help they can get. In the interim of a diagnoses, every effort is being made to make Danicke comfortable and improve her quality of life. A number of children at Danicke’s special needs school have undergone Stem Cell treatments and have been showing incredible improvement. The Jantzen’s would like to explore this options in the hope that they can improve Danicke’s cognitive and physical abilities until a diagnoses can be found for her. We did it with loads of love, support and we are very thankful for everything... We were able to do the full genome test Dec 2020 and we got our answers!! CACNA 1A is the gene mutation which makes her very unique in our world...
One day at a time with loads of love patience and dedication covered with Thankfulness, friends and family!!!
