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.
Joanna is a 32 yr old woman living with cystic fibrosis (CF). After doing poorly on a recent pulmonary function test, Joanna confided in her social worker that she was grappling with bad anxiety. The anxiety was affecting many facets of Joanna’s life, including her breathing test results.
The social worker discussed methods for Joanna to attempt to reduce her anxiety levels. Joanna indicated during this conversation that she really enjoyed working out. She used to go to the gym regularly with a personal trainer.
When the social worker asked Joanna why she no longer goes to the gym, Joanna admitted that she had to cancel her membership due to lack of funds. After moving out of her parents’ home and into her own apartment, Joanna could no longer afford both her gym membership and the cost of living independently. She considered asking her parents for money, but decided against it because her parents were already struggling with Joanna’s independence.
The social worker was able to use the Muriel’s Breath of Life Fund to provide Joanna with six months of a gym membership so that she could reconnect with her personal trainer, and attempt to reduce her anxiety.
Marcus is in his early 20s. Despite living most of his life with CF, he is new to the adult clinic because he did not believe he was sick enough to need any help. Unfortauntely, Marcus has gone many years without treatment and is now suffering from drastic changes to his health.
Marcus lives independently and works in construction. He was very reticent to seek treatment because he did not want to take time off from his job. The nature of Marcus’ work made him particularly hesitant to seek treatment during the spring/summer months, because the warmer weather means steady work.
During his first visit to the clinic in many year, Marcus’ physicians determined that he needed to be admitted to the hospital. Marcus did not want to go to the hospital because he had not yet earned the money he needed to make his rent of the month.
The social worker was able to provide Marcus with funding from the Muriel’s Breath of Life Fund to cover the remainder of his rent fees for the month – giving Marcus the peace of mind he needed to agree to hospitalization.
After a brief admission, Marcus was able to leave the hospital healthier than before, still in his own apartment. Marcus has successfully continued to follow up with the adult clinic and the social worker attributes his success, at least in part, to the wonderful support provided through Muriel’s Fund.
Little Isaac is only 13 months old. He is currently hospitalized here at Children’s Hospital of Pittsburgh of UPMC because of CF exacerbation.
Isaac’s father is the sole breadwinner in the family, working as a construction laborer. Isaac’s mother is a stay-at-home mom who cares for both Isaac and his 5-year-old brother.
Isaac’s hospitalization has been trying for the whole family. Isaac’s parents have been doing their very best to juggle everything, but with Isaac’s mother staying at the hospital consistently to be with Isaac, and his dad working full time and caring for Isaac’s brother, the family has had a hard time staying afloat financially.
The assistance provided through Muriel’s Fund has been a tremendous help for the family. The support provided through the fund helps Isaac’s mom afford the cost of food and other incidentals while she’s here in the hospital with Isaac. And the fund also helps to cover the travel costs incurred by Isaac’s dad as he and his 5-year-old son make the daily trips to and from the hospital to see Isaac. Muriel’s Fund has been an integral resource for the family – making his experience a little less stressful for all of them. The family remains so grateful for the help.
Bruce is a 62-year-old patient living with cystic fibrosis. Although Bruce is currently insured, his insurance company would not cover the cost of a medication that Bruce’s physicians prescribed for him. With the help of his clinical and supportive team, Bruce fought the insurance company and eventually persuaded them to cover the anti fungal medication he needs for his lungs. The Muriel’s Breath of Life Fund provided Bruce with the financial support he needed to cover the cost of his anti fungal medication when the insurance company refused to pay – ensuring that Bruce never experienced a delay in his treatment.
At only three months, Mariella has spent most of her young life in the hospital. Born with CF, Mariella was admitted to the Neonatal Intensive Care Unit (NICU) at Children’s immediately after birth. Although Mariella is now doing better, her first few weeks were fraught with digestion complications and other medical issues that compromised the infant’s health.
With two other children at home, Mariella’s parents struggled to balance spending time with Mariella while also caring for her siblings. The Muriel’s Breath of Life Fund helped Mariella’s parents afford the gas costs they incurred as they made the countless trips back and forth between their home and Children’s. The Fund also ensured that Mariella’s parents had the support they needed to purchase healthy meals while here in the hospital with Mariella. Were it not for Muriel’s Breath of Life, Mariella’s parents would not have been able to spend so much time with her throughout her hospitalization.
At 54, Annie has been living with CF for many years. Annie is unable to work as a result of her condition. She relies on Social Security Income to support herself and Medicare to support her insurance needs.
However, a recent coverage gap left Annie with no way to pay for an inhaled antibiotic she needed. The Muriel’s Breath of Life Fund provided Annie with the financial support she needed to cover the cost of her prescription ensuring she did not have to endure a lapse in her treatment.