About Hilman House

History and Mission

In September 1988, Hilman House opened the doors to a homelike residence for cystic fibrosis (CF) patients and their families to have free housing while undergoing medical treatment at the Cystic Fibrosis Center in Shreveport. Through numerous individual contributions, fund-raising events, and a $60,000 grant from The Community Foundation of Shreveport- Bossier, sufficient funds were raised and a house located at 644 Hemdon in Shreveport was purchased and named in honor of Dr. Bettina C. Hilman, Pediatric Pulmonary Specialist at Louisiana State University Health Service Center (LSUHSC). Since that time, major renovations have been completed. Area businesses donated furnishings and fixtures, and our own board of directors donated $13,000 to fully fumish and redecorate the living/conference area of the house. In 1997, the Charles T. Beaird Foundation along with the Ann-Marie Foundation donated funds to construct a handicap accessible cottage with a bedroom and a bathroom for those in a wheelchair. Cystic Fibrosis, the most common fatal genetic killer of children and young adults today, is an incurable disease that affects the respiratory and digestive systems. Currently, there are approximately 32,000.people with cystic fibrosis in the United States. A defective gene causes the body to produce abnormally thick, sticky mucus which leads to chronic and life-threatening problems in the lungs and intestines causing difficulty in body functions such as breathing and digestion.

• provide a temporary, homelike residence for CF patients and their families;
• facilitate medical research on the local and national levels in connection with the treatment and cure of CF;
• promote fellowship among, and emotional support for, CF patients and their families;
• promote public awareness of and support for CF programs;
• provide education to patients and families regarding CF; and
• develop and support other ways of helping CF patients.

Issues

The Hilman House has identified and addressed the major issues a family faces having a child with a chronic illness. Burdens for these families include physical, financial, psychological and emotional challenges.

Current programs and accomplishments

Today, Hilman House provides a homelike residence for cystic fibrosis patients and their families, and also provides support services as well. The support programs are as follows:

Patient Needs Fund - Because the average medical cost of a cystic fibrosis patient is $1 0,000 to $250,000 per year, Hilman House assists patients with medical bills and prescriptions not covered by other sources.

Food Pantry - A hospital stay of an individual with cystic fibrosis is two weeks to several months. The "Food Pantry" supplies food to family members during the hospitalization. If a patient is suffering from malnutrition, Hilman House provides the patient with "enjoyable food" in addition to their "hospital food." This fund also provides food to families and patients during daylong clinic visits to the doctor.

Hospital Visitation - The Executive Director visits with the cystic fibrosis patient during hospitalization. At this time, the financial and emotional needs of each patient is evaluated by Hilman House. If possible, an answer to the special needs is fulfilled. The Hilman House offers volunteers to take food, movies, books, toys and birthday gifts to the hospitalized patients. Some volunteers run errands for the particular patient by purchasing items such as toiletries and medications or clean their laundry.

Transplant Fund - Because there is no cure for cystic fibrosis, the only hope for a second chance at life is a double lung transplant. If one is lucky enough to comply with the many requirements of being accepted as a transplant candidate; they must relocate to the city where the transplant center is located for approximately 12 months. For example, Bames Children's Hospital is located in St. Louis, Missouri. The patient, along with family members, will relocate to St. Louis until a safe period after the transplant. Living expenses for a second home in another location is very expensive and not covered by an insurance provider. Living expenses, medical expenses and the anxiety of a transplant is too much for a family to handle. This fund helps ease part of the financial burden by assisting with living expenses.

Grief and Bereavement Support Services - Counseling services are provided to patients and family members of cystic fibrosis. Various aspects of counseling are needed for all individuals involved with a terminal illness. Initially the patient must come to terms with the knowledge of having a terminal illness and dying at an early age. The need for counseling to family members such as parents or siblings is great because the day to day medical needs of patients can be overwhelming, as well as, coping with their death.

Nutritional Supplement Program - Nutritional supplements are offered to cystic fibrosis patients to decrease malnutrition and poor growth. Malnourished CF patients are at risk for frequent lung infections and pneumonia causing permanent damage to the lungs which leads to additional hospitalizations and short-term survival rates. Nutritional supplements are most often not covered by insurance providers.

Population Served

The Hilman House serves approximately 440 individuals affected with the terminal illness cystic fibrosis in the State of Louisiana. This number is made up of 1 1 0 patients and their families with an average number of four members in each family. Our population is made up of those from various socioeconomic status, race and ethnic cultures.

Organizational Structure

The Hilman House is directed by a seventeen-member Board of Directors and administered by an Executive Director. To keep administrative costs minimal, the Executive Director is the only employee who receives wages. A caretaker oversees the homelike facility during the night and on weekends. As compensation, the caretaker receives a room adjoined to the facility. The success of Hilman House is due to 200 volunteers who offer their services to our organization. These volunteers include Board of

Directors, cystic fibrosis patients and family members, friends of Hilman House, business employees and members of civic organizations.

Volunteers are involved with our organization by performing in one of the two different categories, working with hospitalized patients or with fund raisers. The Hilman House has volunteers who take food, movies, books, toys, etc. to the cystic fibrosis patients in the hospital. Some volunteers run errands for the particular patient by purchasing items such as toiletries and medications or clean their laundry. Most of all, we have some volunteers who will 'ust sit and listen to the troubles of one with a terminal illness. Also, there are three parties held by volunteers at Hilman House for our patients. They are an Easter Egg Hunt, a Halloween Party and a Christmas Party. These parties are hosted by civic organizations and businesses. The second categories of volunteers are those who are involved with fund raisers. The fund raisers include an annual golf tournament, a coon hunt and a direct mail campaign. The Hilman House receives medical equipment, supplies and physician evaluations wh'ch are donated as in-kind services. Again, the importance of our success is due to the significant number of volunteers who assist our organization.

Relationships with Other Organizations

The Hilman House collaborates with the Samaritan Center to assist with the mission of helping cystic fibrosis patients and their families. The Samaritan Center is a nonprofit, nondenominational center that offers counseling for individuals, families and groups. Through our Grief and Bereavement Support Service, the Hilman House pays the Samaritan Center a small fee to counsel the individuals we serve.

The Shriners Hospital is a charity that we assist in their time of need. The Shriners Hospital for Children offers free medical services to children with orthopaedic disabilities. Because the hospital allows only one parent to stay overnight with their hospitalized child, the Hilman House allows the second parent to reside at our facility free of charge.