Fundraiser for Joe's Vital Nursing
$103,402 of $125k goal
By Dariel Figueroa, Journalist
Video on gofundme.com courtesy of:
Pictures, like memories, are promises of the past. Even if the edges are seared, the whole of it remains. Moments are frozen in photos for you to revisit; the smells, the feelings, the love — it’s all there. I know a thing or two about memories. As a man dealing with ALS, my memories are of the times when I could still move without the use of a motorized wheelchair operated by the only thing that still works: my chin. I have memories of holding my grandchildren, the last four of which I have not been able to rock to sleep or feed; I can’t even feed myself. These recollections are like ghosts, and when I stare at my 11th grandchild, the best I can do is recall the feeling of cradling such vibrant life in my warm hands.
I also know about promises, as in what I regarded as the promise made to me by my union — which employed me for almost 27 years. When I retired on March 2, 2006 the Union Funds office confirmed for me that I would get healthcare for life. This I knew since I worked two additional years for the sole purpose of making sure that I qualified for lifetime health coverage, and my retirement papers indicate 100% retiree medical insurance. In June 2015, three and a half years after I was diagnosed with ALS, and three and a half years after skilled nursing care kept me breathing on the ventilator that pumps life into me, my union told me that they were changing their insurance plans. Letters we received from both the union and the company administering the insurance indicated that the new insurance I would receive would stay the same or become enhanced. That was not the case.
My insurance, the one that provided the skilled nursing that keeps me alive, clean, and inhabiting the closest thing to a normal life that I can imagine in this state, has changed. The insurance plan that I believed was promised to me for life is not staying the same, nor is it becoming better; the skilled nursing was terminated, and without it I will become another statistic in this terrible disease known as ALS. The union has made the decision to take away my skilled nursing coverage, and I believe they have done so without considering what happens to me when the assistance that has been keeping me alive is ripped from my life. I need the nursing to survive.
My wife, Donna, and I have fought against their decision. We’ve been to court, where a Federal Judge said, "This is unethical, immoral and reprehensible, but the union did not break any laws.” Without the union breaking any laws, there is not much to be done. And that is where we are at today.
ALS has taken over most of my functions. My brain is still very much alive, but the vessel I travel in has failed me, but even more so, in my view the system has failed me and the union has failed me. The decades I honored in my profession have been washed away, along with my health coverage. For the union that once was my home, I imagine that this is just a matter of money. But, for me, it’s more than that. This is not merely just a matter of life and death; it is a matter of memory and promise. When I’m gone, it is my hope that those two ideas will continue to thrive and that others so afflicted will not endure the disappointment that I did. But, for the time I do have left, I still want to build new memories, and I want to promise the family and friends around me that those memories will be built with their love. I hope you can help me do that.
This is Joe’s story, and sadly, is not one that is solely unique to him. Unfortunately, thousands are afflicted with ALS, and many cannot pay the costs required in order to continue living. In Joe’s case, though, you can make a difference. Please, join us in helping to provide skilled nursing for Joe so he can keep fighting this terrible disease. By donating, you’ll not only deal a blow to the unfair systems in place, you’ll stand in the corner with Joe as he wrestles with a malady that knows no cure. Fight with Joe. Fight with us.
Joe, Donna and the entire family truly appreciate the help and prayers.
Joe is now in the heavens, at peace and spending time with mom, dad, brother Bud, grand mom, grand pop, Uncle Joe and other family and friends. To say he will be missed is a complete under-statement but we will think of him every day and enjoy the many memories of how he touched all of our lives. He was the best – it’s that simple.
The Swider family cannot possibly find the words to express our gratitude to all of you; along with his nurses (they are amazing!) you helped keep Joe alive over the last 7.5 months. That is a long time that we otherwise would not have had with Joe. The outpouring of love, prayers, well wishes and generosity from all of you has been tremendous. You really did join us in Joe’s fight against ALS and that is something we will speak about forever.
Thank you sincerely for your support of Joe, and for giving us a 7.5 month gift that we will cherish forever.
God bless you all.
The Swider Family
Foxnews.com just published a new online article. It is a follow-up story on Joe and our on-going fundraising efforts. The story was expanded to cover an upcoming documentary that will be out by year-end about ALS patients and their insurance challenges. The documentary is being produced by philly-philms.com, who also produced the video on Joe for our GoFundMe site. Please share the new foxnews.com link with your family & friends:
And please continue to share the link to our GoFundMe site:
If you are new to our GoFundMe site, page down to read Joe’s Story and watch the video at the top of the page.
On behalf of Joe, Donna and the entire Swider family, thank you very much for spreading the word and getting people to visit our GoFundMe site. Every donation makes a difference!!!
The Swider family wants to thank all of you for helping us surpass the $90,000 mark in donations. This is a fantastic achievement - these contributions have been providing nursing coverage for multiple months now. Thank you!!
As amazing as this has been thus far, on-going fundraising efforts are truly vital. Please share our link with your family and friends on social media so they can watch the video and read “Joe’s Story” (found below this update). Every visitor to our fundraising site, no matter how large or small the donation, extends Joe’s ability to receive life-saving nursing coverage.
The link follows:
On behalf of Joe, Donna and the entire Swider family, thank you all very much!!
Thanks to all of you we are very close to our first fundraising milestone. Through your generosity we have achieved $60,000 in donations, and the Swider family extends their sincere gratification for not only the donations but also the sharing of Joe’s story. You have touched our lives with your generosity, support and prayers, and you are making a difference in Joe’s fight against ALS and his insurance tragedy.
Your efforts on social media have played a huge role in getting people to our GoFundMe site. Additionally, our local ABC news station (6ABC) and our local CBS news station (CBS3) provided us with great airtime in our community with their TV broadcasts, and Philadelphia radio station WMMR also aired Joe’s Story as they have been big supporters of ALS. And ICYMI, we recently received our first national exposure on foxnews.com. We continue to work with the media outlets in order to maximize the coverage of Joe’s Story. Philly Philms, www.philly-philms.com, has played an integral part in our media success and we appreciate all of the assistance they have provided.
Thank you again and please continue to share Joe’s story on social media, as every visit to our GoFundMe site is an important one to achieving the next fundraising goal. Various links follow; please use them for spreading the word!
Our GoFundMe link:
On behalf of Joe, Donna and the entire Swider family, thank you all very much!!
Donna + Family, I am so incredibly sad to hear about Joe's passing. It was an honor to meet you both and such a pleasure cook for Joe when he was able to enjoy the meals. I hope you can find comfort in knowing what a wonderful person Joe was, and that his legacy will live on through you all. I wish I could make the services to give you a big hug in person, but unfortunately I'll be away all next week for a family reunion. Sending virtual hugs and many prayers, and I just know my Mom is welcoming Joe into heaven with wide open arms as I type this. Love to you all. ♥ Nicole
Donna, I am so sad to hear about your husband. You and your family are in my thoughts and prayers. Gail
Tommy: My heartfelt sympathy to your family and you. I will keep you in my thoughts and prayers. Sheryl
I am so sorry for your loss. I am happy to have provided just a tiny bit of assistance in allowing Joe to be with you that much long. I know of the difficulties of this disease having a friend who suffered and eventually left us several years ago. We watched, we helped, we loved, and then we let go into the hands of God. I hope the extra time that you got to spend with Joe in his final months brings you solace and comfort in his absence. With love, Frank Plunkett
Donna and family, I am so sorry for your loss. May You know the peace and comfort only God can bestow upon you.
I am so very sorry that Joe has lost his battle. Even though I did not know him personally, from everything I have seen and read, he was loved by many. I hope that good memories help you all through your grief.
Dearest Donna, I am heartbroken to hear of Joe's passing and feel terrible that I did not get to say good bye. Joe touched my life and he will forever be in my heart. My only condolence is that he is no longer suffering and is at peace- the peace that surpasses all understanding. I will pray for you and your family and if you ever need me I am here. Love and admire you Donna, Catherine Harrison
Donna and family I am so sorry to hear that Joe lost his battle with this horrible disease. My prayers go out to all of you and especially you Donna, I know how much Joe meant to you. May god keep you at peace with your great loss.
I feel you whole heartedly on this. Lost my husband in August 2015 after being diagnosed with Bulbar ALS August 2014. I lost everything and just recently spiraled into a deep dark whole. I have been trying for help with this Gofundme. I just need it written better. God Bless you all.
I am delighted that you have raised this money. The big thing is who is trying to fix the situation so it does not happen to others and so you get the care you need beyond the $90,000. Many wishes to you and your family for a less stressful challenge to make the best of an unjust situation.
Joe, unfortunately, yours is the story of many that have fought, and continue to fight, with ALS. I hope that the other union members are mindful of what has happened to you might very well happen to them. And for your union, its board of trustees, and the so called "Welfare Trustees", I have no doubt that they will receive theirs, maybe not in this world, but definitely in the next for their shameful behavior.
Joe, You & your family are in our thoughts and prayers.