Knowledge Nurtures Hope.
“We asked the cardiologist how our son’s heart got this way, and he said that it was called myocarditis, most likely viral in nature. That was the day that our lives would change forever.”
Luke’s Story
“He was really just such a good boy. I mean, people say that all the time when something like this happens, but he was a good kid.”
That was the first point that Kate Newton made about the late Luke Gould and the one she came back to again and again.
Newton’s son, Christopher, had been friends with 10-year-old Luke when he suddenly, and unexpectedly, passed away in the middle of the night in November.
For many months, Luke’s family had no answers as to what happened to the strong, active and seemingly healthy boy who died with no warning or sign. Recently, the family found out that Luke was a victim of myocarditis.
Myocarditis is an inflammation of the heart muscle, which occurs when one of a variety of infections reaches an individual’s heart.
While there can be symptoms prior to death, that is not always the case, and if Luke ever felt unwell, he never let on. After researching, Amy Voit Skowronski, his mother, said that testing for this type of heart failure is not part of a normal autopsy. As a result, Skowronski is petitioning Sen. Timothy M. Kennedy, D-West Seneca, to pass a bill that would make this test part of the regular procedure.
“This is unacceptable as a parent, and I cannot help but think of all the other parents that will never know why they can no longer tuck their child in at night,” Skowronski said.
While waiting for answers was incredibly difficult for Luke’s family, all who knew him agree that a painful void has been left where there once was a well-loved child. Perhaps it is difficult to define what makes a child good, but by all accounts, Luke was someone special. According to his family, they saw that right from the beginning.
When he was born, the umbilical cord was wrapped around his neck and his survival was at risk.
“He was a mess,” Skowronski said. “But he was the most beautiful mess.”
From that day, Luke was on the go and never stopped, according to his grandmother, Diana Voit, whom he referred to as “Brana.”
Luke was an athlete through and through, playing baseball, soccer and hockey in his 10 short years. He was a goalie when he was on the ice, and one that, even at his young age, had gotten the attention of many coaches.
He attended a hockey clinic where he was singled out for his excellence by Sabres players, according to his grandfather, Kevin Voit, whom he called “Papa.”
The young boy continues teaching lessons to those around him, even though he is gone.
His older sister, Jillian Pappagallo, penned a eulogy for him as well as a composition for a class.
The eulogy is titled “Don’t take the time you have here for granted,” and Pappagallo reflects on how short life is and how Luke truly knew what was important, even at a young age.
“He really lived, you know?” said Diana Voit. “That’s what’s important.”
What stood out the most to those around Luke, however, was his unending well of energy. Every picture to be found of the boy captures a face with a vibrant smile, an athlete ready to give his all or a jovial child striking a pose that, no doubt, had those on the other side of the lens laughing.
“He was always the first kid out the door in the morning, looking for people to play with,” said Diana Voit.
It is that vibrant spirit that those who knew him are missing the most.
Newton said that while the days have gotten nicer as of late, her son has mentioned that the neighborhood just isn’t the same without Luke. The streets are quieter more of the time, and pickup games and spontaneous fun just seem to be rarer than before.
“I told him that’s because you and Luke were always the ones to lead the other kids,” Newton said. “Now that he’s gone, that’s something that you are going to have to do. That’s what he would want.”
David’s story
In April of 2005, I was a fit and healthy 49 year old father of five and grandfather of one and taught Mathematics at a boys College in New Zealand. As with a lot of Kiwi’s I enjoyed tinkering in the garage with my vintage Ford and ‘inventing’ gadgets, usually toys, and including a range of human powered vehicles. I was training for the local half-marathon in June and would regularly complete my usual 1 hour 40 run.
The sudden death by heart attack of my sister-in-law at Easter of 2005 gave me motivation to loose a bit of extra weight, so in addition to a solid fitness program, a serious dieting regime was followed. Pretty much all the good eating habits needed had been put in place already – drinking hot water, limiting fats and sugars and salt. It was a matter of winding up the efforts.
At the end of April within the space of one week of feeling less energetic, stomach pains and feverish sweats at night, I was admitted to hospital, a walking dead man with an ejection fraction of 19%
On the first day in hospital after it was confirmed that it was not a coronary attack but myocarditis probably caused by a virus attack on the heart muscles, things were going down fast. I was put on a Heart Balloon Pump for five days straight and over the next while, some improvements seemed to happen but the hot feverish bouts continued.
The family basically had ‘camped’ at the Coronary Care Unit, sleeping variously on chairs and on the floor. Lots of fast food was brought in to keep things going and turns were taken around the bed and there were times when my breathing was so intermittent as to cause serious alarm. Also at some stage there was a clot in the heart but in comparison with other things going on it didn’t get much attention and eventually dissolved itself. I was not always aware of all that was going on but my wife and family were totally devoted and dedicated to being there and doing whatever they could. There was an ever increasing circle of friends and community supporting the family with food and prayers.
By mid-May, after a second round of the Balloon Pump, it and various other lines were removed. Medical opinion indicated that there were ‘hours to live’.
So many people had been praying and one such prayer read to me was Psalm of David 118, vs 17: I shall not die, but live and declare the works of the Lord.
My kidneys had not been functioning for 4 days when, inexplicably, some kidney function returned. There was still a great deal of concern however, as the blood samples showed severe blood poisoning and that night my heart started beating at over 200 beats per minute. Even after surviving such a night, there was huge concern that I would not survive the rounds of shock treatment needed to get my heart back into the correct rhythm. Finally, massive doses of Amiodarone settled my heart and the long slow process of recovery started.
A Pace-maker/Defibrillator was fitted before I left hospital in early July and I was on steroids, immunosuppressants and other assorted medications There were a couple of visits back to hospital, but I had the absolute love of a wife who would not let go, and the total commitment of family, friends, community and hospital staff. By the start of 2006, I had an ejection fraction of 28% and was able to resume teaching part-time. Diagnosis by surgeons indicate that it was a case of Giant Cell Myocarditis which means that my non heart-transplant survival is, as many have suggested – miraculous.
Lisa’s story
I was a 37 year old, healthy mother with a husband and 2 young children, or so I thought. My husband and I were in the middle of moving out of our home and into a condo because we couldn’t find another home as fast as we needed to. It was a stressful time, and to save money, we decided to do much of the moving ourselves. A few weeks after moving, I got sick with a cold, about a week later I got another cold, worse this time. I didn’t think too much of it but when it became so difficult to breath that I couldn’t lay down, I became concerned. Twice I took myself to the emergency room, alone late at night, not wanting to wake anyone. I was sent home with Tylenol, unfortunately I was in last stage heart failure. Looking back, I realize that I have had many times in my life when I have been very sick. Starting in very early childhood, even my birth was traumatic. I had severe allergies, pneumonia, mumps, chicken pox, severe ear infections, and my tonsils out at 2 years old. My mother used to joke about the pediatrician calling on his days off. At age 23 I had a partial molar pregnancy, which is a very rare condition with a viable fetus, however the placenta is cancerous the cells keep multiplying and multiplying. At this time I was fighting for my life for 22 long weeks. The pregnancy ended in the hospital operating room table where my heart stopped. This was my first near death experience. After this time I was no longer afraid of death, because I knew without a doubt that the soul leaves the body upon death and is very much alive. This was very important for what was to come later with GCM. But is was also a precursor for realizing that my immune system was extremely aggressive to anything it perceived as foreign.
My experience with GCM was beyond description other than to say it was terrifying, and I never thought I would get out of the hospital alive. I firmly believe if it weren’t for the support of my family and the non-stop prayer from many people I have never even met, I wouldn’t have left that hospital. When I look back and realize that it all happened within an 8-week period, it seems impossible. How can a healthy person get that sick so suddenly? How could I have gone into the hospital with what I thought was the flu and leave with a new heart? Giant Cell for me wasn’t only about the heart. I nearly had a heart/lung transplant. This disease not only attacked my heart and lungs but all of the muscles in my body. After the new heart was in place I had to learn how to do everything again including breathing, walking, swallowing and even talking took me months because my vocal cords were very swollen from life support. When I left the hospital Christmas Eve, in a wheelchair. I was a totally different person and I wasn’t feeling lucky to be alive at all. I was feeling terrified, traumatized and wondering WHY?
Five years later, I have many ideas as to why. I have been to all sorts of healers, from holistic doctors, to energy healers, to meditation groups. I have learned more about myself, as a person and my body than I ever dreamed I could know. I have learned that there are reasons for sicknesses like this one based on biology, as well as mental and emotional issues and beliefs. I take my medicine faithfully every day, and I view my body as my partner. I listen to its needs and take care of myself in every way I know how. And I am very thankful for my doctors and modern medicine for the chance to live and help other people who are facing adversity. I don’t identify myself with my illness, I see myself as the picture of vibrant health. I wouldn’t ever want to go through something like GCM again, but I do live my life differently now, in gratitude.
