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141 donations

This fundraiser ended on 07/31/12

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This is a fund for my son Thomas Murray who is in need of open heart surgery, Septal Myectomy, due to Hypertrophic Cardiomyopathy

Our 17 year old son Thomas was born with a genetic heart disease Hypertrophic Cardiomyopathy, HCM. This may sound familiar due to Ben Breedlove who lost his life way to soon to this disease. HCM causes the heart muscles to enlarge, as well as possibly having a heart attack. My husband has the disease; he lost his brother at age 16 and mother at age 60 due to HCM. After his mother's passing the gene was discovered and we had our 4 children genetically tested instead of the normal test they have gone through since age 3. Thomas was 8 at the time, and was the only one whose results came back positive. Our lives changed forever that day, especially for Thomas, it was the day he was to sign up for football with his friends to try something new after doing gymnastics for several years. We had to explain he can no longer do sports or over exert himself. He was devistated, angry at the world and "why me".
A short time after we made contact with the 4HCM orgainization. Through them we met the best of the best at Tufts New England Medical Center in Boston, Dr. Maron and Dr. Link, who specialize in HCM. After a few visits we scheduled Thomas for surgery to have an Implantantable Defibulator, my husband has one as well, it is the only thing you can do to hopefully prevent the unthinkable. There is no cure.
Thomas went into a state of depression and anger for several years until at age 14 he found acting through our local theatre company Capital Rep. He landed the role of Dill in "To Kill a Mockingbird". This isn't said to be the star of the show role, but Thomas was so amazing in all of the performances he earned great reviews and a story on the front page of our local Sunday paper. (Here is the link)

Thomas was on top of the world, happy for the first time in years. He felt normal and special in a bertter way now. He since has found filming, photography, fishing and metal detecting. Over the past year or so he has slowly changed again emotionally it has been a struggle with the school's PE program. Since diagnosis he has been shuffled around sitting on the floor during gym to write reports while watching his friends play. I don't blame them entirely he looks normal on the outside, but inside he is scared.

April of this year we went to our local cardiologist (who is not an HCM specialist) and our biggest fear came true. With puberty comes growing, and with HCM this means your heart muscle can grow too. Thomas' septal wall thickness is now 34mm causing obstruction of the flow of blood, he is now in the severe range. This is why for the past several months he has been having shortness of breath, pounding heart beat, tiredness and chest pain. He was immediately put on beta blockers and slowly increased his dosage, but his relief is not enough.

July 6th we went to Boston to see our HCM family of specialist. Again Thomas had an ECHO an EKG, Dr. Maron delivered the news that his muscle is 39mm with severe obstruction. This is when he decided open heart surgery (Septal Myectomy) is what is best. This requires opening up his chest, going through the aortic valve to cut away as much of the muscle as possible to hopefully relieve his symptoms and give him quality of life back. Thomas will be in the hospital for 5-10 days followed by an eight week recovery at home.

Thomas will be a Senior in high school this year. It's supposed to be the best time of your life. He has hopes to go to college in NYC. That's where he feels he belongs. He wants a job, employers are probably afraid to hire him. He wants to drive but is frightened because of how he feels and "what ifs." He's worried about the scar, he already has one, and will need several more surgeries in the future to change his ICD. I try to tell him women love scars they show how strong you are, which he is. At 17 and for all he's been through and needs to go through I feel terrible I can't fix this with a bandaid and a hug. This surgery isn't a cure but hopefully it will make him feel better for a long time. Thomas is a wonderful person who is always the one to talk to the people in the world that others pretend are invisible. He has so much to offer this world with his creativity. He just needs a chance to show it again.

My husband has been a self employed painting contractor for the past 24 years. It is not something he should be doing with his disease, but it's all we know. The economy has taken a toll on us. I am not one to ask for help. I am usually the one to give it when I can. I'm not perfect, but I enjoy helping others. My husband lost both his parents. I lost my mom and my dad is batteling his own illness right now. So, I didn't know where else to turn to.

Our expenses I cannot begin to calculate I just know this is a journey I cannot do alone. Like I said we are self employed so there are no vacation days or sick time to be taken. We do not have a reliable car I may have to rent or borrow, hotel stay, parking, gas, possible home schooling for a short time and unfortunately more trips back and forth to Boston forever. If anything is left over I'd love to get him some type of kindle or computer for entertainment while recooping.

Any donation will be paid forward. I can promise you that. As we know, money isn't what is going to get us through emotionally we need your prayers too.

Thank you from the Murray family,
Marnie, Sean, Seanna, Thomas, Brendan and Max
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