ERLANGER — Jacob Reed was only two hours old when he had his first surgery to correct a medical condition that caused his organs to grow outside his body. He was only six weeks old when he reached the $1-million lifetime cap on his family's medical insurance.

        Since then Jacob, who turned 10 last week, has suffered hearing loss, epileptic seizures, a brain tumor that is slowly claiming his sight, and a muscular disease that is robbing him of mobility.

        He is on Medicaid for Disabled Children, but racks up $1,000 monthly for surgeries, medications and therapies Medicaid won't cover. Over the years, the Reeds have made the rounds of organizations that help sick children — the Easter Seals Society, the Epilepsy Foundation of America, United Way, the Shriners.

        But either the groups don't provide financial help, or Jacob doesn't meet their guidelines.

        “They say things like, "Jacob's not crippled, he's not totally deaf, or your family's not way below the poverty level,'” said Trisha Reed, his mother. “When you live this way for so many years, you come to expect the rejections, but it doesn't make it any easier.”

        That is why the Reeds and others are founding Jacob's Hope, a foundation “for anyone who has fallen through the cracks” in Medicaid services, Mrs. Reed said.

        The group seeks to help cover costs associated with rare, catastrophic conditions and to serve as a database for patients and their families.

        There are almost no organizations for rare illnesses as there are for cancer, diabetes, AIDs and other major diseases. Jacob's Hope may fill that role — directing public attention to these lesser known diseases, their effects, and the needs for research and treatment they create.

        “I would like to see this group address everything from education to health care, to family life for families of special-needs children,” Mrs. Reed said. “Nobody but us knows what it's like to carry a cell phone and constantly worry about your child.”

        Recently, the Reeds learned Jacob could be a candidate for a surgery at Johns Hopkins Hospital in Baltimore that would improve his quality of life. But before Jacob can even be evaluated, the Reeds must raise $400,000.

        “Sometimes it's frustrating, because there's so much financial need out there, and there aren't a ton of places people can go,” said Lisa Holloway, director of program services for the Greater Cincinnati/Northern Kentucky March of Dimes.

        Her organization refers parents to other organizations that can help them. Though the March of Dimes once provided direct assistance to families of children suffering from polio, the group is now dedicated to the prevention of birth defects and focuses primarily on research, education, and advocacy, she said.

        There is no organization dedicated to helping families like the Reeds, dealing with catastrophic illness, said Dr. Peg Wernersbach, director of Cardinal Hill of Northern Kentucky, one of four facili ties operated by the Easter Seals Society of Kentucky.

        “What this little guy has is apparently a rare thing, but it happened,” Dr. Wernersbach said. “And if it happens to you, it's very meaningful.”

        Contributions can be made to the Jacob Reed Fund at The Bank of Kentucky, 3950-A Turkeyfoot Road, Erlanger 41018. The account number is 5152054.
       

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