ESPN hockey analyst Sean McDonough recently hosted a charity golf tournament in support of Cardiac Amyloidosis, a relatively rare and somewhat unheard-of illness. The tournament is a yearly event held in Boston to help raise money for a condition that Sean’s father and longtime Boston sports writer Will McDonough unfortunately died from. “Some of the top hospitals in Boston could not figure out what was wrong with him,” said Sean McDonough.
The tournament helps support the research being done by Dr. Rodney Falk and his team at Brigham and Women’s Hospital in Boston and their goal is to help find medicine for this condition. It saw the likes of Jack Eichel, Noah Hanifin, and ESPN’s John Buccigross come out and show their support along with celebrities like Bill Murray and Charles Barkley. The tournament raised approximately $757,000 this year alone and has raised over $3 million since 2018. This condition is unfortunately unheard of to most people, so what is it?
What Is Cardiac Amyloidosis?
Cardiac Amyloidosis is a condition caused by deposits of an irregular protein known as Amyloid that exists in the heart tissue. These irregularities make it difficult for the heart muscle to work properly. With those problems arising, the amyloid may affect the way electrical signals move throughout the heart. This can potentially lead to irregular heart rhythms and abnormal heart signals. Cardiac Amyloidosis can be inherited by family members. It can also arise from other diseases such as bone and/or blood cancer. The condition is rare in people under the age of 40 and is more commonly found in men than it is in women.
With Cardiac Amyloidosis not being a well-known condition to the public, several people find out that they have it very late in their illness. In Sean’s case, he and his family found out by the time it was too late. On the day that Will McDonough passed, he had a stress test and was told by doctors that he was getting healthier from his heart problems and that he could ease back into activities. Will died shortly after that appointment. “Doctors were shocked and devastated when my dad died,” said McDonough. “So they asked us if we would agree to an autopsy because they really wanted to find out what happened and when they did the autopsy [the doctors] discovered that he had Cardiac Amyloidosis and that is what led to his passing.” Not much was known about the illness back in 2003 and the only reason Sean and his family found out about the disease is because the doctors did an autopsy.
My Experience With Amyloidosis
Before the pandemic, my father began to feel ill as he had a cough that just never seemed to go away. Once the pandemic began, his symptoms never went away. My first fear was that he may have been one of the first people to catch COVID-19, but when he went to the hospital to get checked out his test came back negative. “So what could it be?” That is what I thought as I saw his condition worsen. Our family doctor did a chest x-ray on him and found out that he had pleurisy, which is inflammation around the lining of a person’s lungs that causes tightness in the chest. This causes someone to have difficulty breathing and a painful cough. So my father was told to go to the hospital immediately. Once he was there, he was one of the only patients in the hospital because people were afraid to go because of COVID-19. So while he was there, he was getting tests done and having results come back to him in record time because no one else was having tests done.
My father still to this day says that COVID-19 “saved his life” because without the pandemic and without people being afraid to go to the hospital, he would not have gotten his results back so fast. But in those results that he received, it was confirmed that he had AL (Amyloid Light chain) Amyloidosis.
My family was in shock, we had no idea what Amyloidosis was because it is not as common as other illnesses. With the type my dad was diagnosed with, the Amyloid was attached to his heart, lungs, and kidneys. With this condition, he was now set on a course of action. The plan from his doctors was for him to do 26 rounds of chemotherapy to kill off his weakened stem cells, and once those sessions were over he would have a big operation that would replace his weakened cells with strong cells by doing a stem cell transplant. Chemotherapy was very tough for my dad, the day after his sessions he would be very weak and need help going up and down the stairs. It was an awful experience to witness as his son, I could only imagine how he was feeling.
But through determination and drive, my dad was able to push through the hard days and get to the end. Once he was nearing the end of his rounds of chemo, he was preparing for his stem cell transplant. The process was set to be a very uncomfortable and even scary experience as the side effects were very daunting. But we were given some amazing news, my dad was responding so well to his rounds of chemotherapy that he did not need to have the transplant. So once he finished his final round of chemo, he was done. No more major treatments, and four years later he’s doing much better and still adding to his coveted hockey card collection.
Why This Tournament Is Important
Since 2018, Sean and his family have brought so much awareness to this condition and have helped so many people because of it. “The most uplifting thing is meeting the patients and having them come back every year and seeing how much better their health is than when you had seen them the year before, and hearing all of their great stories about how much healthier they are,” said McDonough.
What this tournament is doing is helping those in need and those who are struggling with this terrible illness. Sean has helped the research team at Brigham and Women’s Hospital tremendously by raising over $3 million to help their research and those who need care for this condition. “For those of us who really know [Sean], we understand the fullness of his heart,” said ESPN’s John Buccigross. “And we see it empty with the tears on his face as he talks about his late father, loving sister, generous donors and patients who are living where once upon a time they would be dead.” With illnesses like this that are seen as small, it does not get much funding. However, with Sean and his incredible team helping raise awareness, many people will live healthier lives because of it.
For those looking to donate, you can do so by clicking on the link below:
