My niece, Chelsea is a beautiful, sweet girl. She is also a very sick young girl. She has a very rare disease called Lafora, a progressive, degenerative myoclonic epilepsy. Since being diagnosed almost four years ago, her life and the lives of everyone around her are forever changed.
Chelsea was an athlete. She was a soccer star, a gymnast and a dancer. Today she doesn’t take a step without someone holding on to her or she will fall down.
Chelsea was a scholar. She was an advanced student with a curious mind and a quick wit. Until recently, if she felt good enough to go to school, there was room for her in the Special Education classroom. That is not an option for her today. Her mind, her ability to think and understand has deteriorated greatly and quickly. She does not understand what is happening to her. Perhaps that is a blessing.
Chelsea’s disease is always fatal and life expectancy is usually 10 years after onset.. Today there is no treatment or medications available to slow the progression of her disease. Her time with us is limited, unless we find a cure.
Chelsea is but one of only a few hundred known cases worldwide. With so few known cases, little attention or money is given to find a cure or treatment for this terrible disease. But now that is changing.
Chelsea’s parent’s, my brother Howard and his extraordinary wife Linda, have founded “Chelsea’s Hope” (http://www.chelseashope.org/ ), to bring together the community of families from around the world, who live with this disease. Together, they have found the researchers working to cure this disease and are raising the money needed to fund this research. There are now trials for treatments being considered by the International Review Board. The treatments are not cures, but may extend the lives of these children until a cure can be found. Now there is hope.
Today more help is needed. The progress made in finding a cure is directly related to the amount of money we can raise to fund the research. The research is being done at UCLA, one of the world’s leading medical research facilities. You can read about the disease, the research, and make a donation by visiting Chelsea’s Hope at http://www.chelseashope.org/ . A treatment and cure are only possible with funding and help from our family, friends and anyone wanting to make a difference.
Please visit the website and read Chelsea’s parent’s story. To live as they live, to watch your child deteriorate as they do, is something that no parent should ever have to endure. Join us, help us to find a cure and let’s make sure that no else has to live with this devastating disease. Thank you.
Participate. Make a difference. Live a life that matters.