Burial costs for Hiatham
Hiatham died today at 16. He was stricken with Lafora Body Disease, a rare genetic form of epilepsy which is terminal. My partner, Howard Gerber, lost his beautiful daughter, Chelsea, to this monster three years ago.
In support of all Lafora children and the ongoing research for the cure, I was blessed to meet this amazing family recently while they were seen by the foremost epilepsy expert at UCLA.
They have had more than their share of woes. Not only was their eldest child diagnosed with a terminal condition which would rob him of his mind and physical function, requiring 24/7 care but the father was diagnosed with Lymphoma requiring immediate treatment. Both parents had to stop working, taking them into poverty. The family of six ate out of food banks to buy the experimental drugs for Hiatham in hopes of keeping him alive long enough for a cure.
This family has been devastated today. They have no money to bury their sweet son and brother.
Please count your blessings and PLEASE donate whatever you can. It takes a village and but for the Grace of God.......
