Help Austin get to Boston!
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This is Austin, my 15 year old son. We live in Eugene, OR, with his younger brother, Alex, and our beloved pug, Meredith. Up until now we have all been very active, healthy and happy, the three of us playing sports year-round and enjoying all our community has to offer. I work part time as a Registered Nurse on the night shift of the Neurology unit of Sacred Heart Riverbend hospital. Austin is a kind, intelligent, responsible teenager, quiet until you get to know him, then he will entertain you with his quick wit and mischievous grin. He is in the tenth grade, and has always maintained A's and B's in advanced classes. I love him, and his brother, more than life itself.
In August of this year, Eugene experienced a week of 90 degree heat, right during daily doubles for fall sports. Austin came home from football practice and began complaining of chest pain, shortness of breath, and fatigue. When simply resting, cooling, and hydrating didn't alleviate his symptoms, I took him to the emergency department, where he was found to have an abnormal EKG and Echocardiogram. We were referred to a local cardiologist, Dr. Frances Munkenbeck, who gave us a probable diagnosis of Hypertrophic Cardiomyopathy. This. Was. Terrifying. I feel incredibly fortunate that we were able to catch this before a more serious situation occurred. HCM is a leading cause of sudden cardiac death in young, otherwise healthy athletes, as typically the person is not progressively symptomatic, but suddenly, as was the case with Austin. We obtained a second opinion from, and are now being followed by, Dr Stephen Heitner at OHSU in Portland, OR, who performed more imaging, labwork and specialized testing, and added another layer of a definitive diagnosis, Obstructive Hypertrophic Cardiomyopathy. The interior walls of Austin's heart are irregularly thickened, which makes it difficult for the heart to pump blood effectively. The fill-squeeze-release action is altered, causing the heart muscle to work much harder than normal to provide the body with the oxygen-rich blood it needs. This leads to his symptoms of chest pain and pressure, dizziness and feeling faint, high blood pressure, shortness of breath and anxiety, especially with exertion. If HCM is not treated, it can lead to cardiac arrest and a sudden fatality. He has been taking the medication Diltiazem, in order to decrease the workload of his heart, and it is working well, after some dose changes, but he still has symptoms nearly every day, they are just milder now, and a reminder for him to slow down and rest. He was restricted from all competitive sports, and has missed more school in three months than he has in his entire life combined. We have been to the emergency room four times, once in an ambulance, and have been slowly coming to grips with a new way of life.
A few weeks ago, we were given the option of reparative surgery, to reshape the heart wall muscle, and give back my sports-loving, strong young man the life he used to have. It's open heart surgery. In Boston. I can say that out loud now without tears. We decided it was worth the risk, and have a surgery date of January 14th, 2015, with a consultation on December 9th, also in Boston at Tufts University. I am using gofundme to help raise money to cover our travel expenses, medical bills and lost wages, as I will need to take about 4 weeks off postoperatively to care for Austin. I have no savings to draw upon, and live paycheck to paycheck as it is. I have been a single mother since the boys were 18months and 3 years old, with not a lot of predictable child support to help. We do have insurance, thank goodness, but there are always medical bills coming in the mail anyway, as anyone who has health problems can attest.
This has been life changing, in a short period of time. It's changed who we all are, how we live. I'm suddenly the parent of a child with a serious lifelong medical condition, when previously we only ran through the usual colds and minor sports injuries. Adults are adaptable though, and have learned coping strategies and strength through life experiences. Teenagers, however, are still figuring out the world and how to be within it, and I've seen my son have to change his reality, from planning on a college scholarship through his talented skills at wide receiver, to now not really knowing how he fits in, how he feels most like himself, and it breaks my own heart every single day. We are hoping for a full recovery after January's surgery, and that he can once again be able to shoot hoops with his brother in the driveway, toss the football on the turf with his buddies, and live an active, full, healthy life. Please consider donating to Austin's fund, any amount will help us to feel more secure, and lessen the anxiety that comes with a sudden medical diagnosis, and the financial struggles that come with it. My family thanks you.
In August of this year, Eugene experienced a week of 90 degree heat, right during daily doubles for fall sports. Austin came home from football practice and began complaining of chest pain, shortness of breath, and fatigue. When simply resting, cooling, and hydrating didn't alleviate his symptoms, I took him to the emergency department, where he was found to have an abnormal EKG and Echocardiogram. We were referred to a local cardiologist, Dr. Frances Munkenbeck, who gave us a probable diagnosis of Hypertrophic Cardiomyopathy. This. Was. Terrifying. I feel incredibly fortunate that we were able to catch this before a more serious situation occurred. HCM is a leading cause of sudden cardiac death in young, otherwise healthy athletes, as typically the person is not progressively symptomatic, but suddenly, as was the case with Austin. We obtained a second opinion from, and are now being followed by, Dr Stephen Heitner at OHSU in Portland, OR, who performed more imaging, labwork and specialized testing, and added another layer of a definitive diagnosis, Obstructive Hypertrophic Cardiomyopathy. The interior walls of Austin's heart are irregularly thickened, which makes it difficult for the heart to pump blood effectively. The fill-squeeze-release action is altered, causing the heart muscle to work much harder than normal to provide the body with the oxygen-rich blood it needs. This leads to his symptoms of chest pain and pressure, dizziness and feeling faint, high blood pressure, shortness of breath and anxiety, especially with exertion. If HCM is not treated, it can lead to cardiac arrest and a sudden fatality. He has been taking the medication Diltiazem, in order to decrease the workload of his heart, and it is working well, after some dose changes, but he still has symptoms nearly every day, they are just milder now, and a reminder for him to slow down and rest. He was restricted from all competitive sports, and has missed more school in three months than he has in his entire life combined. We have been to the emergency room four times, once in an ambulance, and have been slowly coming to grips with a new way of life.
A few weeks ago, we were given the option of reparative surgery, to reshape the heart wall muscle, and give back my sports-loving, strong young man the life he used to have. It's open heart surgery. In Boston. I can say that out loud now without tears. We decided it was worth the risk, and have a surgery date of January 14th, 2015, with a consultation on December 9th, also in Boston at Tufts University. I am using gofundme to help raise money to cover our travel expenses, medical bills and lost wages, as I will need to take about 4 weeks off postoperatively to care for Austin. I have no savings to draw upon, and live paycheck to paycheck as it is. I have been a single mother since the boys were 18months and 3 years old, with not a lot of predictable child support to help. We do have insurance, thank goodness, but there are always medical bills coming in the mail anyway, as anyone who has health problems can attest.
This has been life changing, in a short period of time. It's changed who we all are, how we live. I'm suddenly the parent of a child with a serious lifelong medical condition, when previously we only ran through the usual colds and minor sports injuries. Adults are adaptable though, and have learned coping strategies and strength through life experiences. Teenagers, however, are still figuring out the world and how to be within it, and I've seen my son have to change his reality, from planning on a college scholarship through his talented skills at wide receiver, to now not really knowing how he fits in, how he feels most like himself, and it breaks my own heart every single day. We are hoping for a full recovery after January's surgery, and that he can once again be able to shoot hoops with his brother in the driveway, toss the football on the turf with his buddies, and live an active, full, healthy life. Please consider donating to Austin's fund, any amount will help us to feel more secure, and lessen the anxiety that comes with a sudden medical diagnosis, and the financial struggles that come with it. My family thanks you.
Organizer
Ivy Mary Magdelinquent Ellis
Organizer
Eugene, OR