„Living with AHC is sometimes like being trapped in a nightmare that never ends“
jv´. h890ivub vOur beautiful little girl has to suffer so much and sometimes we as parents along with our doctors struggle to help her push through her attacks that are relentless and can keep her trapped in her fragile body for weeks. In these attacks she is unable to walk, talk, move her hands and even swallow. It´s just heartbreaking and really makes you question your faith.
Neurologist have stated that AHC has the symptoms of ALL other neurological disorders.
Just imagine that you child has a neurological disorder that is known and has treatment available, that alone is very hard.
Now imagine that your child has a rare neurological disorder called AHC that has no effective treatment.
Not only does your child have to deal with one disorder like Cerebral Palsy, Parkinson´s, Epilepsy, autism or ADHD but have all the symptoms of these disorders wrapped into one. That is just plain evil ☹
We can do so much better to improve the quality of life for these children but we desperately need funding and manpower to work on research and even to help them with basic equipment to make their lives a little better.
AHC parents also need help, some families can´t even find a neurologist in their own country that is familiar with AHC and many don´t have the means or opportunity to travel to see another neurologist that knows the disorder. These families get isolated from the community and the parents burn out.
Yet these children are so joyful and full of life when they get time off the attacks and it somehow makes us parents forget about the struggles and remember the good moments we have, at least for a while…..
There is so much work to be done for AHC and we haven´t even scratched the surface yet.