Saving the life of two teenage siblings

A parent’s worst fear is to receive news that their child is ill. This fear turns into a nightmare when you learn that the illness is terminal. Unfortunately, we have been living this nightmare which took a dark turn when BOTH our son and our daughter were diagnosed with Lafora disease. We were robbed of the one role we had as parents—to protect our children. We have been blessed with two beautiful kids, our eldest, a 17-year-old, ambitious and driven young boy and a very talented, artistic 14-year-old daughter who are both fighting for their lives, battling Lafora disease. We are reaching out in hopes to get funding for clinical research for a possible treatment for a very rare and aggressive ailment. This is a very rapidly progressive disease and it has turned our lives upside down as we are witnessing our children decline mentally, physically and emotionally with each passing day. Lafora disease is the most severe form of human epilepsy. It is an inherited myoclonus epilepsy syndrome. The cruelest things about Lafora is that a normal, beautiful and apparently healthy child who has everything to live for is faced with nothing more than a “death sentence”. Therapy is primarily palliative and aimed at reducing seizures. From manifestation, which is normally the first seizure, a Lafora victim will die typically within 10 years of initial onset of symptoms. As of this moment, there is no FDA cure. Currently there are two potential treatments that are in the pipeline. There are multiple companies in the United States working on potential treatments supported by researchers from around the world, unfortunately as is so often the case it comes down to a question of funding. We thoroughly believe that an increase in funding can help accelerate the work of these gifted scientists, and not just save our children but also Lafora children around the world.
If we can obtain money to perform the trials our children will have a fighting chance to survive. As each day passes, our children are declining rapidly. Our once healthy and active son, has reached a point where he has difficulty talking, walking and eating. We were informed he will very soon be wheelchair bound and will need a feeding tube placed. We are desperate and pleading for all the help we can get to save our children. As I have mentioned, this is a very rare disease and there is little research and NO cure. And it is even more uncommon to have BOTH children affected. We will be forever in debt to those who will help provide our children with a chance for survival and put this nightmare to rest.