D.O.B. Apr. 28 1996 

D.O.D.  Nov. 30 2004

Benjamin is a 4 year old boy who loves trains. He loves to play with them and is totally fascinated by the way they sound. He also used to love to run and play in the parks. Playing on the swings and slides was one of his favorite things to do. An interactive hyper little boy full of energy. But now Benjamin no longer goes to the park because all he can do is sit in the sand box, with his mother or someone by his side because he has seizures. He was just 2 1/2 when he was diagnosed  with battens disease (juvenile neuronal ceroid-lipofuscinosis). Battens disease is a neurological disorder that masks symptoms of epilepsy. When Ben was 2 he started having seizures. His parents took him to the doctors and doctors ran all the tests and blood work but could not determine what was causing his seizures. For six months they treated his symptoms as epilepsy. The doctors could not understand why the medications were not controlling his seizures, some of them being grandmal seizures.  At the age of 2 1/2 he was having upwards of 100 seizures a day. His parents had to hold him almost constantly to keep him from hurting himself. His doctors did one final skin biopsy test on him for Battens disease and it came back positive.  That was just before Christmas of 1999. There was a sigh of relief from his parents to finally know why their little baby boy has been going through for so many turmoil months. Now to control the Battens diesease. His spirit goes up and down constantly. One day he is smiling and happy and has energy and the next moment he is ill and needing to be held all the time. Its like smoke and mirrors.

Currently Ben is on an experimental drug that appears to help him somewhat but it is still experimental. Time alone will tell.
Since that time his seizures have dropped immensely and he can sometimes sit alone for a few minutes at a time without falling over.  He has lost most of his bodies motor skills as well as his speech. He cannot run and play as other children. He cannot call out mom or dad. His disease has debilitated him to an infancy stage. His mother has taken him to the park but to watch him just sit in the sand pushing his truck back and forth, while all the other children run and play is too disheartening for her and her child. He is fed through a G-tube and is on numerous medications to control his seizures. Ben loves to go swimming and his parents take him to the pool once or twice a week. The buoyancy of the water helps him move his limbs and with the aid of a life preserver and and his parents by his side he can enjoy life as a little boy should. As well as trains he likes Barney and Franklin. He also enjoys any movies with Barney, he hasnt gotten past the infancy stage and these are the things he was interested in before he became ill.  enjoys watching movies and looking at books. Anything that has to do with trains amuses this little boy. Please make his life a little brighter and send a card or gift today.

Please pray for his family.