her ability to walk , talk , eat or even breathe on her own . An oxygen machine pumps air into her lungs around the clock . Anthony Leoni knew they needed help . `` If you told us 10 years ago this is how your life is going to be , I would have said we 're not capable . We do n't have the training , ability , we do n't have the energy , we do n't have the stamina . '' They found Bill Feeman of Westside Regional Center . `` When you walk into this home and you see Jessica , -LSB- you -RSB- just fall in love with her , '' Feeman says . `` She is a sweet soul -- you see her , she 's physically helpless , yet there 's a light that shines out of her eyes , it takes you in . `` When you meet this family and you see how hard-working and involved they are , you just wan na do everything you can to help . '' Watch the family 's heartbreaking struggle '' Feeman worked to find in-home support in the form of nurse caregivers
LOS ANGELES , California -LRB- CNN -RRB- -- Anthony and Lisa Leoni have little time to worry about whether California 's budget crisis will affect their daughter 's life-sustaining care . Anthony and Lisa Leoni are afraid of budget cuts that pose a threat to daughter Jessica 's care . A steady stream of nurses , caregivers and therapists visit 12-year-old Jessica at home around the clock . Jessica suffers from a rare and fatal disease called Niemann Pick Type C . A cholesterol imbalance destroys healthy cells in the liver , spleen and brain . Although Jessica led a relatively normal life before the illness worsened , her mother always knew the disease would eventually take over . `` Jessica was playful , happy and loves people . My heart was always a flutter because you never knew how many moments you 'd get , '' Lisa Leoni says . In Jessica 's case , a grand mal seizure suffered Memorial Day weekend 2005 brought a world of hurt to the Leonis . At the height of her symptoms , Jessica suffered up to 60 seizures a day . The disease , also known as NPC , has stolen