CF Care Fund: Providing cystic fibrosis patients with care and support.

The CF Care Fund helped preserve the health of a CF patient who lives with her mother, father and a teenage brother in southern New Jersey.  After  her father was laid off from his job, her mother became the family’s primary breadwinner, working as a receptionist. Dad worked odd jobs when he could find them to help make ends meet, and took full responsibility for the girl’s care. Over time, her health worsened, necessitating more frequent hospital stays and, during the same period, her father was diagnosed with end-stage liver disease. Mom became responsible for the care of both patients, as well as the family’s sole breadwinner–and with more medications to buy and less money coming in, she faced a shortfall. The CF Care Fund was delighted to step in, paying all out-of-pocket costs for CF medications, which amounted to hundreds of dollars each month so that the girl’s care was not interrupted.

The CF Care Fund had the privilege of helping a young boy who was diagnosed with CF and who was cultured with the bacteria, pseudomonas, at an extremely young age. The boy’s parents were distraught, as they could not afford the medications that would eradicate this bacteria, which meant he would experience a steep and unavoidable decline. The CF Care Fund paid for the medications, and this young boy is now free of pseudomonas and doing very well.

A teenage boy on oxygen was evaluated for a lung transplant at one of the CF Centers with which the CF Care Fund partners. His lung function was extremely low, as was his overall well being. His family couldn’t afford to make the options available to him for physical activity that his doctor recommended, so the CF Care Fund paid for a membership at a local gym. He recently told his doctors that the only time he feels like he has energy–like he is himself–is when he has had a physical work out. That small gesture has changed and dramatically improved his quality of life.

The CF Care Fund had the opportunity to help an eleven-year-old boy with CF who emigrated from the Ukraine with his mother so that she could marry. When they arrived in this country, the boy was critically ill and severely malnourished. While waiting for their US health insurance to begin covering expenses, the family incurred many medical bills due to frequent hospitalizations that they could not afford to pay. The CF Care Fund covered their medical expenses in full and also provided the boy with a gym membership at the request of his doctor so that he could improve his overall condition. He is now doing much better and has health insurance coverage.

The CF Care Fund was privileged to help a teenage boy whose mom died when he was young and whose father works two jobs to care for him, which means he spends little time at home. This very sick young man is truly in charge of his own health and has not been able to meet the many demands placed on him. At the request of his doctor, the CF Care Fund provided medical equipment that allows the school nurse to do his physical therapy each day and monitor lung function in an effort to stabilize his health.