Children who are born with Batten Disease come into this world, healthy, beautiful babies. They grow into typical energetic kids who love to run, play, jump, and have fun. Life is good until around the age of onset (discussed later on) when they start having vision and mobility problems. Batten children are usually misdiagnosed several times—Autism, Infantile Neuroaxonal Dystrophy(INAD), epilepsy, etc. After the child begins having seizures at around age of onset, and the doctor's have ruled everything else out then they are usually diagnosed with one of 4 types of neuronal ceroid lipofuscinosis (LINCL), or more commonly know as Batten Disease. This disease transforms their happy childhood into a living nightmare. Batten Disease is a rare illness caused by a defective gene. The body tries to compensate for the defective gene, but around age of onset, it just can’t cope anymore, and the neurological system begins to break down. Batten Disease takes their sight, speech, and mobility. They have seizures, a feeding tube, and eventually will not be able to walk. The child will become blind and have very limited control of their body. In the early stages they can still walk and talk, but their speech will become more difficult to understand and generally they become afraid to walk up or down stairs. Sometimes they will just stare into space. The child will blink their eyes as they try to cope with losing their vision. They know something is wrong, but do not understand what is happening to them, and I know it has to be very scary for them. It is heartbreaking to watch them lose their self. At this time, Batten Disease is ALWAYS FATAL. There are 4 known types with a known difference being the onset age and life expectancy. There is Infantile (onset at around 6 months with life expectancy of 2-9 years), Late-Infantile, (onset around 4 years of age with life expectancy of 6-12 years), Juvenile (onset between 4-10 years of age with life expectancy of 13-25 years), and Adult (onset around age 30 with life expectancy of 40 years). These children ALWAYS die as there is no cure. Fewer than 450 children in the United States have Batten Disease, so it receives little funding for research. The U.S. Government contributed less than $700,000 to Batten Rare Diseases research in a recent year, and only a handful of scientists around the world are focusing on potential therapies. We desperately need your voice to help us reach out and educate others in hopes of finding a cure. Research is the only way we will be able to find a cure. We have lost too many children to this horrendous disease. I have created this Facebook group Help Fight Batten Disease to raise awareness of this disease and to raise funds to support research to find a cure. Please become part of our Fight Against Batten Disease. Please go to www.bdsra.org to donate funds and to learn more. It is only through expensive research that we can find a cure. I challenge you to use your name and platform to raise awareness and funds for these children. Please be our hope in a world of sadness.
