It takes a village...
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It takes a village, so won’t you please help me raise some funds to help my family!
My sister Julie and her husband Glenn have been dealing with the struggle of their lifetime. Glenn is a very private person, especially about his health struggles. I’m sure me writing this may be a surprise to most who haven’t realized the severity of his condition. But they’ve been on this medical journey for over 5 years trying to find a diagnosis for Glenn’s severe inability to breathe. The past two years have been the most severe and most challenging. They’ve visited countless specialty doctors over the years as well as a Naturopath. Been seen at all the major hospitals: Cleveland Clinic, Mount Sinai, Yale and even National Jewish in Denver, Colorado. Still, very few answers. He’s had every test and invasive procedure available to try and figure this out. He’s endured years of painful injections and awful medications. All the while struggling to breathe. Meanwhile, many of these tests, procedures and medications were not covered by insurance or had insanely high co-pays. To date, they’ve spent over $100,000 to get answers and help. The financial burden has been devastating, and it continues.
While they’ve finally been given a diagnosis, the doctors are not convinced that it’s the only problem. Glenn has Granulomatosis with Polyangiitis, formerly Wegener’s Disease, which is a very rare Auto-Immune Disease that causes inflammation of the blood vessels, causing the inability to breathe, yet they’re suspecting that there’s possibly another issue that they need to explore. He recently received several infusions of the chemotherapy drug Rituxan, which so far hasn’t given him any relief and may or may not be the treatment that will help him. As of a few weeks ago he is now on oxygen every day. Believe it or not, his oxygen is not covered by his insurance as his levels are considered too high. So they will be paying several hundreds of dollars each month to have this at home for him. Due to the Corona Virus, he’s unable to travel back to Denver for further testing and now has to go to The Mayo Clinic in Jacksonville for further investigation, which is quite a journey for them. And again there are many expenses associated with this trip that will be out of pocket.
Julie has been Glenn’s rock. She’s fought with insurance companies, fought with doctors to be heard, researched every possible cause and treatment, exhausted most of their options and resources, even reached out to drug companies for help, all the while being Glenn’s full time caregiver. Neither of them would ever ask for financial help, which is why I am! Our family feels so helpless, we can’t fix his medical problems but maybe we can take away some of the financial burden.
When my son was sick 10 years ago, the amount of support and financial help we received was incredible, I don’t think we could’ve made it through without it, and I’d love to be able to do the same for them. Any help you can give would be greatly appreciated and will go directly to them for the financial burden that this illness has caused. No dollar amount is too small, and every dollar will be greatly appreciated.
Glenn has a lot of life to live and we need to make it a much better quality. He may be my brother-in-law, but in my heart he is really my brother. He’s been in our family since I was 8 years old. They’ve got 3 amazing sons, a great daughter-in-law, 2 beautiful Granddaughters and a lot of memories yet to make. We need him to be healthy again. Anything will make a difference. Thank you for you kindness in advance!
My sister Julie and her husband Glenn have been dealing with the struggle of their lifetime. Glenn is a very private person, especially about his health struggles. I’m sure me writing this may be a surprise to most who haven’t realized the severity of his condition. But they’ve been on this medical journey for over 5 years trying to find a diagnosis for Glenn’s severe inability to breathe. The past two years have been the most severe and most challenging. They’ve visited countless specialty doctors over the years as well as a Naturopath. Been seen at all the major hospitals: Cleveland Clinic, Mount Sinai, Yale and even National Jewish in Denver, Colorado. Still, very few answers. He’s had every test and invasive procedure available to try and figure this out. He’s endured years of painful injections and awful medications. All the while struggling to breathe. Meanwhile, many of these tests, procedures and medications were not covered by insurance or had insanely high co-pays. To date, they’ve spent over $100,000 to get answers and help. The financial burden has been devastating, and it continues.
While they’ve finally been given a diagnosis, the doctors are not convinced that it’s the only problem. Glenn has Granulomatosis with Polyangiitis, formerly Wegener’s Disease, which is a very rare Auto-Immune Disease that causes inflammation of the blood vessels, causing the inability to breathe, yet they’re suspecting that there’s possibly another issue that they need to explore. He recently received several infusions of the chemotherapy drug Rituxan, which so far hasn’t given him any relief and may or may not be the treatment that will help him. As of a few weeks ago he is now on oxygen every day. Believe it or not, his oxygen is not covered by his insurance as his levels are considered too high. So they will be paying several hundreds of dollars each month to have this at home for him. Due to the Corona Virus, he’s unable to travel back to Denver for further testing and now has to go to The Mayo Clinic in Jacksonville for further investigation, which is quite a journey for them. And again there are many expenses associated with this trip that will be out of pocket.
Julie has been Glenn’s rock. She’s fought with insurance companies, fought with doctors to be heard, researched every possible cause and treatment, exhausted most of their options and resources, even reached out to drug companies for help, all the while being Glenn’s full time caregiver. Neither of them would ever ask for financial help, which is why I am! Our family feels so helpless, we can’t fix his medical problems but maybe we can take away some of the financial burden.
When my son was sick 10 years ago, the amount of support and financial help we received was incredible, I don’t think we could’ve made it through without it, and I’d love to be able to do the same for them. Any help you can give would be greatly appreciated and will go directly to them for the financial burden that this illness has caused. No dollar amount is too small, and every dollar will be greatly appreciated.
Glenn has a lot of life to live and we need to make it a much better quality. He may be my brother-in-law, but in my heart he is really my brother. He’s been in our family since I was 8 years old. They’ve got 3 amazing sons, a great daughter-in-law, 2 beautiful Granddaughters and a lot of memories yet to make. We need him to be healthy again. Anything will make a difference. Thank you for you kindness in advance!
Organizer and beneficiary
Linda Adams
Organizer
West Haven, CT
Julie Zullo
Beneficiary