http://en.wikipedia.org/wiki/Batten_disease
Recently I attended a breakfast with a group of men from my church. We do this once a month to socialize, enjoy each other's company with humour and good fellowship. Every time one of us will share with the rest of us a testimony of his spiritual journey, what he feels is important to him, what important events led him to be where he is now in his life.
A friend of mine who has agreed to share with me his personal story but has asked me for reasons of privacy not to include his name so he will be "Frank" here. Frank gave a wonderful witness. He is a very spiritual man who understands that God is there to give us strength when we need it, grace when we feel we can go no further. All we need to do is pray and ask for help. Frank had a daughter who was afflicted with Batten Disease, which is a neurological degenerative disease which affects vision, learning, causes seizures and generally is a nightmare for the families of the victims to deal with, but more especially for the victims themselves. There is no cure as of yet. The disease is always fatal. There is a support group, called the Batten Disease Support and Research Association which provides information about research but there is a lot of work to be done. We do need to pray for the victims and families of this disease, and provide support.
I would like to thank my friend Frank for his assistance in providing information to me.