Thanks for taking the time to visit my JustGiving page.

This Sunday we will be fund raising money for sufferers of a little know disease that is extremely under funded. Student and friend, Ben Murphy’s son has suffered with Alternating hemiplegia of childhood (AHC) from birth. We will have a bucket handy for people to make cash donations on the day, I will try and get a qr code set up too for those who want to donate via card. Here’s Ben to explain how Solomon (Bens son) struggles on a daily basis.

My son Solomon suffers with this 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.

Thank you for taking the time to read ❤️