Stories of Courage

I Will Never Forget Him

I have learned that you don’t always cherish what you have in life, until they are gone. About three and a half years ago, my father grew very sick. He went to see many different doctors, but no one could find anything wrong with him. After almost a year of frustration and suffering he was diagnosed with amyloidosis. At first, my family thought he could get better. He went through very hard treatments and was in and out of the hospital all spring and summer. My dad passed away when I started fourth grade. We finally realized that he was going to die a long time before he actually did, and so did he. It was awful for me, my mom and my brothers to see him suffering in his bed, knowing that he was going to die, and there was nothing that we could do about it at all. I felt helpless and hopeless. The worst of it was that before we knew that he had a bad disease, he was very sick, and understandably mean and grumpy. I started to regret a lot of things I did to him when he was alive, and wondered if somehow it was my fault. It was awful to see him lying in that bed looking terrible day by day. Some nights I had to cry myself to sleep. I’m afraid that my memories of him are going to be a mean, grouchy dad, instead of the great man, funny person, and nice soul that he actually was. I will never forget him, or the impact that he made on my life forever. I hope by sharing my story and helping the who is amy? foundation, we can make doctors more able to recognize this disease early, before it is too late for their patients and maybe help find a cure.

Zach Holz- 13 years old

Amyloidosis Survivor, Brenda Gregory

Brenda Gregory suffered with amyloidosis for over a year before doctor’s correctly diagnosed her disease. By raising awareness and funds, Who is amy? is working to empower doctors and researchers to find a cure.

Amyloidosis survivor Brenda Gregory serves as source of inspiration and support for those whose life has been affected by the disease. Her symptoms began at the age of 54, shortly after moving to Phoenix, AZ. She was feeling tired, had painful headaches and nausea. Simply moving her hands and arms was painful. Attributing her declining health to anemia and carpal tunnel syndrome, she suffered for a full year before doctors diagnosed her with multiple myeloma and amyloidosis.

As her disease progressed, amyloid protein caused Brenda’s kidney function to decline. When her kidney function was at only 34% of normal, she started chemotherapy treatment. To stop the further damage of her organs, doctors advised her to have an autologous, or self, stem cell transplant. A common treatment for amyloidosis, this procedure uses a patient’s own stem cells to produce new blood cells that do not produce amyloid protien. Before the transplant, intensive chemotherapy is necessary to destroy the disease causing cells. These high doses of chemo left Brenda weak and with almost no immune system. However, Brenda made it through this very risky procedure. The transplant was successful, and she has been in remission for 9 years!! Today, she maintains a positive outlook feels she is “really blessed”.

Advancements in medicine make it possible for doctors to implement sophisticated treatments such as self-stem cell transplants for amyloidosis. There are 1,200 to 3,200 new cases of amyloidosis reported in the US each year. Countless patients may suffer with the disease and remain undiagnosed. Raising awareness and increasing research into new treatments will help more patients like Brenda survive this debilitating disease.

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Mike Cooper's Story

Starting in 2001, Mike Cooper's health began to deteriorate. Mike was extremely active, an avid skier and hiker, but out of nowhere started to feel exhaustingly weak. Suddenly, Mike had little to no energy and by 2003 could barely make it up a flight of stairs without wheezing, pausing, and pain. He had other strange symptoms such as a blood-type rash on his face and body, trigger finger and weight gain as a result of fluid in his lungs. The process was unimaginable. Mike went from doctor to doctor and was told that he had heart problems. However, none of the typical treatment plans for heart disease were effective and no exam would show accurate results. Finally, Mike was hospitalized and an emergency heart biopsy concluded that Mike had a rare, incurable blood disease called amyloidosis. Only a difficult and risky bone marrow transplant could prolong his life. 

Mike was treated with a peripheral stem cell transplant, in which his doctors collected his own stem cells, gave him a life-threatening dose of chemotherapy in order to rid his body of amyloid-damaged cells, then transplanted his own cells back into his bone-marrow. The process is extremely risky and the recovery lengthy. Mike was subject to two autologous stem cell transplants (2003 and again 2006), chemotherapy, medication, hospitalization and a quarantined recovery. 

Mike recovered for a beautiful and fulfilling 12 years and inspired other amyloidosis patients, family and friends. If he didn't take action immediately, his heart, organs, and body would have been overtaken by the disease within a few months. Mike passed away October 13, 2015. His legacy and strength for fighting this disease for so long will live on forever. He loved the outdoors, cooking, volunteering for the community, working as a successful attorney and fathering his three girls, Shelley, Sarah and Becca. He was also a great friend and advisor to many. 

For most, limited knowledge or a late diagnosis may lead to irreversible damage on the body or ultimately, death. In response to Mike's arduous diagnosis and struggle, Becca, Shelley, Sarah and Michele were prompted to take action. They wanted to make it easier for others after encountering limited answers within the medical community concerning the dire situation.