Missouri Department of Health and Senior Services Provides Help to Family
of Child with Cystic Fibrosis

For Immediate Release:
June 17, 2002

Contact:
Paula Fox, Quality Improvement Coordinator
1-573-751-6246


Missouri Department of Health and Senior Services Provides Help to Family of Child with Cystic Fibrosis

Although Cystic Fibrosis is a big name, it often strikes very small children, like six-year-old Preston R. of Springfield, Missouri. To look at
little Preston, the average person would never know that he has Cystic Fibrosis. He looks the same as other children, he talks the same as other children, and he plays just as much as other children. Everything about Preston is the same, except that he has to wear a life-saving vest four times a day for up to twenty minutes each time in order to break up the mucus that routinely builds up in his chest. Without the vest, Preston could have medical problems that would severely affect his health. That's just one of the reasons why his parents were motivated to enroll him in Missouri's Bureau of Special Health Care Needs Program.

As they do for many physically challenged children in the state of Missouri, the Bureau of Special Health Care Needs (BSHCN) provides Preston and his family the help and support that they need to cope with the pressures of raising a child with special health care needs. As part of Missouri's Department of Health and Senior Services, the BSHCN develops, promote, and support systems for children and adults with serious or chronic medical conditions. To be eligible for the bureau's programs, a family must meet certain medical and/or financial guidelines, which vary by program. For children like Preston, the BSHCN is on hand to provide critically needed services such as financial assistance, information about support resources, special medical equipment if needed, outpatient tests, inpatient hospitalization, and counseling.

Although Preston has few of the external symptoms of his condition, whenever he wears his vest he is constantly reminded that without it he would face severe pain as well as several other unpleasant symptoms. Like most youngsters he doesn't know what things cost, but his parents Tricia and Randall, certainly know. They know that without the BSHCN, and the assistance of Anita Cruzan, L.C.W., C.C.M., their service coordinator, they'd be facing mountains of medical bills, while Preston would be facing a very uncertain future. As the family's liaison, Ms. Cruzan keeps her fingers firmly on their situation so that she can provide immediate counseling and other services before problems develop.

According to Ms. Cruzan, "Each child is different and very special to us. We enjoy being available to help our families with their various issues.
A child in medical need could be born in any family. We just want to be there to help."

Randall R. said, "Without help from the BSHCN, we would have had to pay out over $13,000 just for the vest and that doesn't even begin to take into consideration the other expenses." The BSHCN also provides the various prescription drugs and medicines that Preston constantly needs.

Cystic Fibrosis is a common hereditary disease found especially in Caucasian populations and usually appears in early childhood. It involves
generalized disorders of the exocrine glands and is marked by an especially faulty digestion due to a deficiency of pancreatic enzymes.

In Preston's case, the vest that he has to wear shakes his chest in order to break up the fluids. Because of his condition, he will have to wear the vest his entire life. Preston's mom, Tricia says, "Without the vest, we'd have to literally pound Preston's chest with our fists in order to break up the mucus. So we're definitely happy that he has it. We really appreciate everything that the BSHCN has done to help our family and Preston." Randall adds, "When I see him feeling good, I'm happy."

The Bureau of Special Health Care Needs provides services to eligible children and adults in Missouri, through it's nine field offices. The offices are located in Independence (816-350-5433), Columbia (573-882-9861), Springfield (417-895-6900), Cape Girardeau (573-290-5830), St. Louis
> (314-877-2850). Families interested in knowing more about the program can contact the Bureau of Special Health Care Needs office nearest their home, or call the main location in Jefferson City at 1-573-751-6246. Interested parties can also review their web site at http://www.dhss.state.mo.us/SHCN.