Eddie's Story

Every day for thirty-two years, Edward W. Wlodarski struggled to manage his cystic fibrosis and, as an adult, to remain independent and fulfill his financial obligations. In 1998, transplant was his only option and he willingly pursued candidacy and was accepted. Yet, as wonderful a miracle that transplant offered him, his financial stresses grew with the expected transplant costs. Assisted by his sister, Stephanie, they began an aggressive fundraising campaign. But sadly Edward lost his battle with CF later that year.

It was through his eyes and struggles that Stephanie knew something had to be done to ease the burdens faced by those with cystic fibrosis. Less than two years later, in 2000 Stephanie's resolution to help others like her brother was memorialized in the establishment of the Lungs for Life Foundation.

Growing up, Eddie and I were as typical as siblings come -we argued, wrestled, irritated each other and, had a stronger bond than either one of us would ever admit to.

Eddie was angry, arrogant and mean spirited at times, but he was also strong, proud and gentle hearted as well. There were many facets to Eddie with the more distasteful ones, in my firm belief, a direct result of his illness. Yet in thinking back to our youth his CF is also what made him the great and amazing person that he was and will always continue to be.

He never, ever let his CF get in the way (unless of course he was hospitalized) and other than his appearance you wouldn't even know he was sick. Above all, he most respected those who also did not treat or look at him differently -and being his sibling it was easy for me. I can't say the day ever came where I treated him like he had CF -I figured if he can dish it, he can take it! This relationship worked out well for us over the 32 years we grew up together. There is another sibling, a younger brother, Leonard, that had his own bond and memories of our brother. I would love to insert his memories here, but alas he is a man of few words.

Eddie did not do anything in life that would be recognized by the casual observer as "memorable", "fantastic" or "historical" -he didn't go to college, he didn't have a retirement plan or goal, he didn't save lives. BUT he was a great and amazing person. He would be the first person to help a friend in need, even if it was physical labor that would make it difficult to breathe, he'd do it. On the coldest of winter days or the hottest of summer days, he would work on cars -whereas, maybe because I'm a girl I couldn't handle the cold -or excessive heat. He was amazing.

As a young child he started shoveling driveways in the winter to earn extra cash and I offered to help, even though I was not a big fan of the cold (it was really so I could be sure he was safe, although I would never tell him that). Eddie also at one point took on a paper route...well I wanted to help with that too...so I joined him. Those winter days were killers! I was such a wimp and here he was thinner than I was, less meat on his bones and with CF to boot, and he's pulling me in the wagon as I cried because I was so cold! Yes, he was amazing.

In grade school I took on the responsibility of being a crossing guard -and he'd stand right there against the metal fence watching over me to finish so we could walk home together. I also signed up for trumpet one year (not quite sure why -that was a big mistake) and I'd complain about how heavy it was and he'd care it home (later I decided to switch to the flute!). Eddie always watched over me and one day I "had his back" so to speak. A neighborhood boy had said something mean about Eddie and I just went off on him. Now picture this petite little girl wailing on a larger older boy -we all laugh about it now but his mother wasn't too happy and told my mother to "keep your daughter away from my son". But I wouldn't expect someone outside our family to understand why I took the action that I did. Just because someone is not what you consider like yourself doesn't give them the right to be disrespectful. Yes, the Wlodarski's grew up with compassionate hearts and we always look out for the "under dog".

I did not "fight" in Eddie's honor again until a few years preceding his death. Until then life had progressed along for all of us and every day Eddie continued to fight his CF.

Then on a beautiful day in October 1994, Eddie and his wife, LeAnn were married. LeAnn was an absolute angel -he knew it -we all knew it. I was so happy for him as I thought he'd never find someone who would love him for who he was -and one day she just appeared. LeAnn stood by his side and took care of him from day one, all through his 24x7 care in the end stages of his life. We are all grateful -as I know he was as well. No matter what roads our lives may lead us down, be it similar or different -LeAnn will always be my sister-in-law. I know she struggled greatly with Eddie's passing. She didn't know where to go, what to do, what was her "position" in our family now that Eddie was gone. Being a widow at such a young age my heart broke for her too. As with any death we all dealt with Eddie's passing in our own way.

In 1998, Eddie was very proud to be able to attend his 2nd niece's baptismal. Although on oxygen, in a wheelchair and very weak he proudly stood as he was named her godfather. We all had hope that Eddie would receive his transplant and one day be able to play with his godchild.

During all these life events Eddie struggled -financially and emotionally. That is not to say, he didn't enjoy life at times but it was more often a rough road than an enjoyable one. But as I've already pointed out, Eddie was a fighter. He also was a hard worker and believed in taking care of himself and not asking for handouts. But as an adult, the social services system wanted him to pay a spend-down (co-pay) that he couldn't afford. The system felt that since his wife earned, what they considered "enough" money (mind you, she worked in a fast-food restaurant -there was rent, food, bills, medical care, health care, general care, transportation, etc) that he was not eligible for full-coverage. This co-pay put an ever further strain on his finances and grudgingly he turned to family for help. But as he continued to meet the co-pay requirements, with family help, the amount kept going up. It reached a point where it was just getting too difficult to keep coming up with these rising fees -even collectively as a family.

We couldn't fathom him not getting the home care and oxygen that he needed. And he wasn't eligible for full coverage because the state physician said he was able to work and his wife worked. I was so furious that this "quack", for lack of a better word, would make such a statement when he was on oxygen and barely had enough energy to stand up and use the restroom! I honestly believe for every frustration Eddie felt, I felt it two-fold. Disheartening it was, to say the least.

I remember looking every where I could for help. Not much came up on the internet searches (at the time), the state program couldn't help because of his wife's "income" and I even went to national well-known organizations only to be turned away because the assistance we needed didn't exist and they did not know where to direct us.

One day it just got to be too much for him and he called me in desperation and asked, "What do I do?" I felt powerless, I didn't know what we could do. You know the old saying, 'you can't fight city-hall" -that's now I felt, it was so obvious of his needs and yet the state system that was put into place to help exactly these types of individuals was turning their backs on him. I gave him the only advice I could, as a sister looking out for the interests of her family. I told him LeAnn should leave her job and he should stop paying the co-pay. My rationale at the time was he needed this medical care and how could he be refused life saving oxygen just because he couldn't pay -and couldn't work to pay the costs? It was the worst solution I've ever had to come up with and not one either of us was willing to accept -but if it was the only way...then so be it. It may not have been the best or more appropriate solution, but we do what we have to do to survive. Eddie's fight was my fight as well, and it just made me more furious that we even had to consider this as an "option" just so he could live from day to day.

Needless to say, we never reached that point. Eddie became ill and was hospitalized. Just weeks before our annual family Thanksgiving, Eddie passed away peacefully -on his own terms.

I have many happy memories of my brother and I will always remember him fondly. I will also remember the emptiness I felt the day he passed away. And I'll always be angry at myself for not getting to his room in time. I had so much to say -and I had more than a few chances to say it in the preceding days. I just couldn't bring myself to do it because I felt if I did I was actually saying 'goodbye'. As much as I didn't want him to suffer anymore I also didn't want to lose him either.

In the months following Eddie's funeral I was just heartbroken and full of sadness -the best way I could describe it was that I felt alone. I struggled with picking up the pieces, carrying on and wondering how I could provide to others with CF the very assistance my brother so desperately needed -to give hope -to improve quality of life. Time passed, I thought a lot about Eddie, visited his gravesite often and then I met my husband, Robert. I told him all about Eddie, his struggles and the fundraising we did. His response was so clear and yet it had never entered my mind, he said, "you should start a charity that provides this assistance." In less than a year and a half from Eddie's passing, and with the support of my loving husband, I established the Lungs for Life Foundation in Eddie's memory.

I may not visit the cemetary as often as I used to and that is because I have come to know in my heart, my guardian angel is always there looking over me...


About This Blog

Welcome to the Lungs for Life BREATHE blog. It is here that I hope to keep you informed, provide resources and just stay in touch with asthma, cystic fibrosis, organ donation and transplant communities.

Feel free to contact me with any questions or concerns you may have. Thank you.


The teal-green lung(s) graphic images were designed and generously donated to Lungs for Life by a young man, James Binegar, who lost his fight with cystic fibrosis while waiting transplant. We deeply appreciate James' work on our graphics and for donating his time to LFL. He will be missed but his memory will live on through our use of his graphics.

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