Muriel’s Breath of Life Making A Difference
Having cystic fibrosis affects nearly all aspects of life—not least of which are the costly and ongoing expenses that result from treating this chronic, life-threatening disease. Muriel’s Breath of Life supports cystic fibrosis patients in our region, as well as their families, who may struggle to pay for these costs.This ranges from adults who are unemployed or underemployed due to their chronic health problems, yet still must find money to pay for expensive co-pays, to the parents of newly diagnosed newborns who must travel, often from far distances, so their baby can be seen in clinic several times a month. Living with cystic fibrosis and treating it successfully can be complex and overwhelming. Muriel’s Breath of Life is designed to step in when they need extra help and support the most.
2-year-old Anna lives in rural Pennsylvania with her parents and three young siblings. Recently, Anna experienced a severe CF exacerbation that landed her in the intensive care unit, followed by a prolonged stay in the hospital.
Even though her father works hard as a farm laborer, Anna’s family needed some assistance in covering the cost of medical bills. However, because of her family’s religion, Anna was not eligible for state Medicaid. Thankfully, Muriel’s Fund is a private fund that was able to step in and provide the necessary support that ensured Anna was well taken care of.
Muriel’s Fund helped to provide assistance for Anna’s extended family to travel back and forth from the hospital, in addition to covering costs of medications and co-pays that the family would not have been able to pay on their own. Without Muriel’s Fund, Anna’s surmounting medical costs may have affected her family’s ability to give her the necessary follow up care. They remain grateful to Muriel’s Fund for helping to provide relief to their little one.
Eddie is a 13-year-old CF patient who lives in Pennsylvania with his parents and two siblings. His father was recently laid off from his manufacturing job, but due to periodic call backs, Eddie’s family is not eligible for unemployment compensation.
As if the financial burden of unemployment wasn’t enough, Eddie’s little sister also suffers from a chronic illness. Muriel’s Fund was critical in providing Eddie’s family with heating oil as well as groceries since his family only qualified for a very small amount of food stamps. Despite the relentless financial stress, Eddie’s family has remained unbelievably optimistic about their future due to the kindness and caring assistance of Muriel’s Fund.
8-year old Morgan has Cystic Fibrosis. While his parents were accustomed to caring for Morgan’s medical needs, they never expected that their own health was also fragile until Morgan’s mother suddenly became gravely ill. With Morgan’s mother hospitalized in an Intensive Care Unit at a hospital out of state, Morgan’s father was left to care for the family and household.
Although temporarily unemployed, Morgan’s father attended school to become a certified electrician in the evenings and juggled Morgan’s care and visits with his wife during the days. Muriel’s Breath of Life helped Morgan’s dad afford his many travel expenses as he balanced his wife’s care, Morgan’s care, night school and his many other commitments. Morgan’s family was humbled by the generous assistance they received from Muriel’s Breath of Life.
Thankfully, Morgan’s mother received the transplant she desperately needed and is doing much better. Muriel’s helped this family through an incredibly difficult time in their lives and they remain quite grateful for this help.
38-year old Henry lives with Cystic Fibrosis. CF has taken its toll on Henry’s body over the years, leaving his lungs in bad shape and necessitating the use of supplemental oxygen. Henry is unable to work as a result of his condition. Although Henry receives disability assistance, he is effectively underinsured, making his high co-pays difficult to afford.
Henry’s financial difficulties eventually resulted in bad debt as his oxygen and clinic co-pays went unpaid. When debt collectors began contacting Henry for payment, he turned to his social worker for help. Luckily, Henry’s social worker enrolled him in several programs to help him cover his co-pays and provided him with funds from Muriel’s Breath of Life to cover the cost of his outstanding debt. Muriel’s helped Henry attain a clean slate, providing him with the chance to focus on his future rather than his past.