What an incredible effort from Ben Murphy at Tiger Temple who walked the length of Hove lawns on his HANDS! Ben is raising money for Cure AHC as his son Solomon suffers from the rare disease.
AHC causes episodes of paralysis, dystonia, and nystagmus. These episodes come on without warning, and Solomon looses the ability to walk, crawl or even sit up. Sometimes the episodes are so strong he even has to fight just to breath and changes colour, and becomes blueish in his face and lips. As you can imagine this is very scary and life threatening. Solomon screams in pain. I cannot even imagine how intense this pain is. Episodes come and can last for hours at a time. Sometimes on and off like this for 10 days at a time.
Every AHC episode runs the risk of brain damage, regression, and even death. I’ve lost count of the number of times I’ve prayed to God he would make it through a severe episode, thinking this could be it.
So far there is no cure, and very little can be done. There is no money going to research due to the how rare this disease is. This is where @cureahc come in, and are funding research to find a cure or at least research how we can maximise these special peoples quality of life.