Amyloidosis Foundation Charity
Donation protected
I wish I had known more about Amyloidosis....
My dad, William, was will incarnate. There was nothing he could not do - he was superman minus the red cape. He was impossibly strong; I don’t exaggerate when I say I saw him lift a more than 500lb snowmobile when we got stuck on the trails in Canada. Constantly active, he was always coaching my sporting teams, skating with me on homemade ice rinks, racing me and my brother down the slopes of mountains, swimming, hiking, dancing – you name it, and my dad could do it. To me, it seemed that there was nothing that could stop my dad, my superhero.
Many would say my dad looked like a bear, but under the calluses that lined his hands and under the layers of muscle, was the biggest heart. He was as kind as he was strong. He loved to make people laugh and would laugh along with them – he was type of person to light up a room when he walked into it. He had a baritone voice that you couldn’t help but listen to and the stories he told – although prone to hyperbole – would enrapture anyone in his vicinity. To know him was to love him, and he would be the first person to lend a helping hand to anyone who needed it. He always saw the good in people and something in him, brought out the good in everyone who knew him. He lived life to the fullest and was the best dad, friend, teacher and inspiration anyone could ask for.
A little over two years ago, my whole world changed. Mid-summer of 2014, I sat in the hospital with my dad, as we talked with his primary care physician about his swollen tongue (a symptom that is pathogenic to Amyloidosis) and his general feeling of unwell. The doctor told him that it was probably just old age starting to creep in, or perhaps allergies, but that it was nothing to worry about and that he should “just take an aspirin.” I remember asking the doctor what he meant by “old age.” My dad was only 53 and as I mentioned, a powerhouse of a human being. The fact that he was even in the hospital meant something was seriously wrong, he was not the type to complain about anything. At my insistence the doctor ran minimal blood work, which did not return any abnormal results – so the question still remained: what was wrong with my dad?
The next couple of months went from bad to worse. My father’s health continued to deteriorate so quickly – he started to have serious trouble breathing and had no appetite. He was diagnosed with asthma and prescribed an inhaler – which ended up causing him to pass out behind the wheel of his truck and hit the side of a house – luckily no one was hurt and minimal damage was done, all things considered. In the emergency room he was diagnosed with Atrial Fibrillation (Afib). Nothing seemed to help.
After a 10 day stay in the hospital, my family heard for the first time a potential diagnosis that would change our lives forever. He was told he might have Amyloidosis. We were heartbroken – the internet told us people did not live for more than two years with the disease. However, on October 3rd our hope was renewed – they ruled out Amyloidosis and told us it was probably just a serious case of Afib. I remember being so excited, I told my dad that I was going to get married on October 3rd for that was the best news we could have received. However, even with the ablation of his heart, all of the medications and treatments, my father still did not get better. His heart kept getting weaker and weaker, and we were no closer to an answer as to what was wrong with him. There were several more admissions to the hospital and when he went in for a follow-up visit on Halloween my dad could barely form sentences in between gasps for air. Then the unthinkable happened - he was diagnosed beyond question with Amyloidosis.
It had been five months that he had been going through this, was told no less than three times by many doctors, from many specialties, that he did not have Amyloidosis…but here it was. We found a doctor in Boston by the name of Dr. Comenzo (who is on the board of the Amyloidosis Foundation) – who looked at my father’s records and my father and stated that without question my father had AL Systemic Amyloidosis. We were amazed by how quickly a diagnosis took place with the doctor who was an expert in Amyloidosis and knew what to look for. He immediately ran a bone marrow biopsy and was able to get at the root cause of the disease – plasma cell dyscrasia (a type of blood cancer) causing an over production of Lambda light chain proteins.
There was so little known about this disease and the only thing that mattered to us was there was no cure. Dr. Comenzo, however, was a ray of hope. He explained that with an autologous stem cell transplant my father could live longer – and although a cure still hadn’t been found, with treatment he could expect to resume his normal life. This would have all been available to my father had the earlier doctors known enough about this disease to diagnosis it correctly or if my family had known about the disease and what to look for. But by the time my father got to Dr. Comenzo, his health had deteriorated to such an extent that saving his life was going to be a long shot. But this was my father - who was stopped by nothing - so we had hope and we believed and prepared ourselves for a Christmas in the hospital with the greatest gift being my father’s return to health.
My father died waiting for this treatment on the morning of November 19th 2014 at just 53 years of age. He was not able to see me graduate from college or get employed at EDQ. He missed his 25th wedding anniversary and will miss so many more milestones to come.
The thing that is so hard for my family, and for all who knew him, was that this did not have to happen. Many people have said to me, well it is such a rare disease, how could anyone have known? And that’s just it – we should have known. There should have been more awareness about the disease. In fact, studies have shown that the disease is not as rare as everyone thinks – it is just rarely diagnosed properly or soon enough. Furthermore, the same proteins that cause Amyloidosis have been found to also play a role in ALS and Alzheimer’s. If my dad had been accurately diagnosed at the beginning, he would have had a chance of surviving for many years and with luck and medical advances, into old age. That is why this foundation is very near and dear to my heart. They provide research grants and clinical trials, and are working to educate hospitals, doctors, patients, and families on this awful disease so that no other family has to lose someone like we did.
Please help me and the Amyloidosis Foundation raise awareness and put an end to this disease.
To learn more -
The trouble with diagnosing rare diseases. WATCH: https://youtu.be/7VyDgJ0lsHM
Anyone who donates $25 or more will recieve a foundation wristband, showcasing your support of the people and families impacted by the disease.
From the bottom of my heart, thank you!
Foundation homepage: http://www.amyloidosis.org/
What is amyloidosis: https://vimeo.com/3358025
YouTube Tribute: https://www.youtube.com/watch?v=ovRLmQY3-DY
My dad, William, was will incarnate. There was nothing he could not do - he was superman minus the red cape. He was impossibly strong; I don’t exaggerate when I say I saw him lift a more than 500lb snowmobile when we got stuck on the trails in Canada. Constantly active, he was always coaching my sporting teams, skating with me on homemade ice rinks, racing me and my brother down the slopes of mountains, swimming, hiking, dancing – you name it, and my dad could do it. To me, it seemed that there was nothing that could stop my dad, my superhero.
Many would say my dad looked like a bear, but under the calluses that lined his hands and under the layers of muscle, was the biggest heart. He was as kind as he was strong. He loved to make people laugh and would laugh along with them – he was type of person to light up a room when he walked into it. He had a baritone voice that you couldn’t help but listen to and the stories he told – although prone to hyperbole – would enrapture anyone in his vicinity. To know him was to love him, and he would be the first person to lend a helping hand to anyone who needed it. He always saw the good in people and something in him, brought out the good in everyone who knew him. He lived life to the fullest and was the best dad, friend, teacher and inspiration anyone could ask for.
A little over two years ago, my whole world changed. Mid-summer of 2014, I sat in the hospital with my dad, as we talked with his primary care physician about his swollen tongue (a symptom that is pathogenic to Amyloidosis) and his general feeling of unwell. The doctor told him that it was probably just old age starting to creep in, or perhaps allergies, but that it was nothing to worry about and that he should “just take an aspirin.” I remember asking the doctor what he meant by “old age.” My dad was only 53 and as I mentioned, a powerhouse of a human being. The fact that he was even in the hospital meant something was seriously wrong, he was not the type to complain about anything. At my insistence the doctor ran minimal blood work, which did not return any abnormal results – so the question still remained: what was wrong with my dad?
The next couple of months went from bad to worse. My father’s health continued to deteriorate so quickly – he started to have serious trouble breathing and had no appetite. He was diagnosed with asthma and prescribed an inhaler – which ended up causing him to pass out behind the wheel of his truck and hit the side of a house – luckily no one was hurt and minimal damage was done, all things considered. In the emergency room he was diagnosed with Atrial Fibrillation (Afib). Nothing seemed to help.
After a 10 day stay in the hospital, my family heard for the first time a potential diagnosis that would change our lives forever. He was told he might have Amyloidosis. We were heartbroken – the internet told us people did not live for more than two years with the disease. However, on October 3rd our hope was renewed – they ruled out Amyloidosis and told us it was probably just a serious case of Afib. I remember being so excited, I told my dad that I was going to get married on October 3rd for that was the best news we could have received. However, even with the ablation of his heart, all of the medications and treatments, my father still did not get better. His heart kept getting weaker and weaker, and we were no closer to an answer as to what was wrong with him. There were several more admissions to the hospital and when he went in for a follow-up visit on Halloween my dad could barely form sentences in between gasps for air. Then the unthinkable happened - he was diagnosed beyond question with Amyloidosis.
It had been five months that he had been going through this, was told no less than three times by many doctors, from many specialties, that he did not have Amyloidosis…but here it was. We found a doctor in Boston by the name of Dr. Comenzo (who is on the board of the Amyloidosis Foundation) – who looked at my father’s records and my father and stated that without question my father had AL Systemic Amyloidosis. We were amazed by how quickly a diagnosis took place with the doctor who was an expert in Amyloidosis and knew what to look for. He immediately ran a bone marrow biopsy and was able to get at the root cause of the disease – plasma cell dyscrasia (a type of blood cancer) causing an over production of Lambda light chain proteins.
There was so little known about this disease and the only thing that mattered to us was there was no cure. Dr. Comenzo, however, was a ray of hope. He explained that with an autologous stem cell transplant my father could live longer – and although a cure still hadn’t been found, with treatment he could expect to resume his normal life. This would have all been available to my father had the earlier doctors known enough about this disease to diagnosis it correctly or if my family had known about the disease and what to look for. But by the time my father got to Dr. Comenzo, his health had deteriorated to such an extent that saving his life was going to be a long shot. But this was my father - who was stopped by nothing - so we had hope and we believed and prepared ourselves for a Christmas in the hospital with the greatest gift being my father’s return to health.
My father died waiting for this treatment on the morning of November 19th 2014 at just 53 years of age. He was not able to see me graduate from college or get employed at EDQ. He missed his 25th wedding anniversary and will miss so many more milestones to come.
The thing that is so hard for my family, and for all who knew him, was that this did not have to happen. Many people have said to me, well it is such a rare disease, how could anyone have known? And that’s just it – we should have known. There should have been more awareness about the disease. In fact, studies have shown that the disease is not as rare as everyone thinks – it is just rarely diagnosed properly or soon enough. Furthermore, the same proteins that cause Amyloidosis have been found to also play a role in ALS and Alzheimer’s. If my dad had been accurately diagnosed at the beginning, he would have had a chance of surviving for many years and with luck and medical advances, into old age. That is why this foundation is very near and dear to my heart. They provide research grants and clinical trials, and are working to educate hospitals, doctors, patients, and families on this awful disease so that no other family has to lose someone like we did.
Please help me and the Amyloidosis Foundation raise awareness and put an end to this disease.
To learn more -
The trouble with diagnosing rare diseases. WATCH: https://youtu.be/7VyDgJ0lsHM
Anyone who donates $25 or more will recieve a foundation wristband, showcasing your support of the people and families impacted by the disease.
From the bottom of my heart, thank you!
Foundation homepage: http://www.amyloidosis.org/
What is amyloidosis: https://vimeo.com/3358025
YouTube Tribute: https://www.youtube.com/watch?v=ovRLmQY3-DY
Organizer
Delaney Burke
Organizer
Boston, MA