Fundraiser for Papa Fez❤
November 2, 2021 my dad passed away. Please see obituary in Hartford Courant (online or in the paper) Please donate to our cause, every cent counts.
I do not even know where to begin what I am about to write right now but here goes nothing:
As you must know by now, my Dad, aka: Papa Fez, Jim, Jimmy, and James, has been extremely sick with amyloidosis since May 28th 2018. That is when the nightmare began.
My dad has been fighting harder than anyone could ever imagine. Setback after setback, treatment after treatment, and for years longer than he was told he would, he fought. Let’s not forget my mom who has been the strength (our anchor to be exact) for the three of us for the past 3+ years. She is as tough as Dad was determined. I could not imagine a stronger and braver wife, mother, or woman.
My parents have been together since they were teenagers and have been married since 1985. My life has flourished because of them. I came along in eighty-seven in case anyone is making a timeline here. I see so much of my mom and dad in me daily. The way they raised me molded me into the strong, courageous, funny, hardworking, lighthearted woman I have become today.
Before that, in 1980, my parents were on someone’s front lawn at a party where they were struck by a drunk driver; catastrophically damaging dad’s leg which was traumatically lost (amputated shortly after the accident) and severally hurting my mother, as well. Of course, it being1980, authorities did not find the hit-and-run driver. They lived. All that really mattered was that they were ok. (Because then how else would you know me). My dad then proceeded to finish college and went off to make prosthetics and orthotics for inner city kids. A man who had so much taken from him so young, yet he went on giving (once he woke up from a year- long, medically-induced coma with 1 leg, of course).
He has always been a hero to me, because, despite all his hardships, he always made a joke that made everything better, softer, easier. He made me feel safe and secure, whether he was physically with me or not. When he was diagnosed with amyloidosis, he never asked “Why me?” He just moved forward and fought for his life, even though he was so uncomfortable. He could not stand the idea of not being there for my mom anymore. He always provided for my mother and me. I’m sure those of you who are reading this, who are my friends, or who ever met him, at all, can attest to Dad’s humor, generosity, goofball spirit, and selflessness.
I wish I could switch places with him. Not to be morbid or inappropriate, but I would give my life for him to be able to live his longer. I would have donated any organ he possibly needed if that would have helped in any fashion.
My dad lost the ability to eat about 2 years ago. He is fed only by TPN (total parental nutrients) through a port that goes directly to his heart. In June 2021, he lost the complete ability to speak, see, move his arms or legs, walk, use the bathroom himself, or do anything you and I do on a daily basis. My mom was a champ and took full care of him, including meticulously administering his TPN (super difficult to learn with no medical background). He has been trapped in his brain for 4 months, hearing us and communicating with noises and sounds that my mom and I have figured out. After a million different neurologists’ visits, we finally got answers to my Dad’s sudden, seemingly progressive brain changes.
He recently tested positive for the John Cunningham virus and Progressive Multifocal Leukoencephalopathy. Let me give you a second to google that….
Ok, with the diagnosis of JC virus/Progressive multifocal leukoencephalopathy, there is no current treatment or cure for this disease in autoimmune compromised individuals. His neurologists and oncologists give him about 3 weeks to live starting NOW.
My poor Dad doesn’t deserve to suffer like this. I love him more than I love myself, so this has been the hardest time of my and my mom’s lives. I would like to thank all of you who have supported us during this time. Unfortunately, my father’s life insurance policy has lapsed, and I am in gut-wrenching fear of the cost of his end-of-life care, as well as a proper memorial for my Dad
Here is the hard part:
I am asking all of you who have asked me in the recent months “Is there anything I can do to help you or your parents” to please donate anything you can for my family to help us with a memorial for my dad, end of life care for my dad, and other expenses associated with his care. I will say thank you in advance. Any cent counts.
Thank you, thank you, thank you!
#Fightlikeafezio
#amyloidosisawareness #rarediseaseawareness
#JCvirusawareness
#PMLawareness
Thank you for fighting so hard for us, Dad. Life will never be the same without you.