for young people with childhood heart disease.

Isaac's Story

From HSC to Boston for heart surgery

Written by Isaac, 23 September 2015  |  Ebstein’s Anomoly 

From a very young age, I knew that I was not physically as strong as the other kids in my class. I didn’t know why or how but I knew that I could not run as fast or jump as high as they could. Later I discovered that this was because I had a congenital heart condition called Ebstein’s Anomaly. To be honest, as a young kid I didn’t really know what it involved other than the fact that it was bad and rare. It has restricted me, no doubt, but I am glad I’ve been able to keep pace with my friends in the classroom, join in supporting the sports I love and finish 13 years of school.

Right now, I’m facing off against the looming and hectic HSC exam schedule but while my friends will take their journeys from there to schoolies, gap years and uni I have another big challenge ahead.

The fact is, it’s getting harder to do the things I used to do. I have never been one to be racing around the rugby field or sprinting across the cricket pitch but I used to be able to do more. And so, later this year I am heading overseas for some very specialised heart surgery not available in Australia.

This is a huge thing but just as my school mates are looking forward to their post school adventures, I am looking forward very much to the opportunity to travel to Boston after my final exams to get a heart operation.

This trip is a glimmer of hope at getting about more easily and doing more of the things I love. Travelling overseas for surgery is no picnic. As well as being in a strange country, with a medical team you don’t know, the surgery is very expensive but unlike some other heart conditions, treatment of Ebstein’s Anomaly is restricted to only a few sites around the world. The Mayo Clinic, Minnesota, and the Children’s Hospital, Boston both offer the ‘cone procedure’, which is what the cardiologists say I need.

This is ‘the most extensive valve reconstruction ever performed on any human valve' (according to Dr Cetta, Mayo Clinic). The operation aims to repair the tricuspid valve by detaching and re-positioning the leaflets, suturing them into a ‘cone’ shape, so that the heart may function more like a ‘normal’ heart.

This journey that we take, as kids living with a heart problem, can seem daunting, but there are moments of excellence. Like my trip to Boston or when your mates rally around you. I was lucky to be part of a high school that really catered to my abilities and allowed me to be a part of the sports I love even when I wasn’t up to the physical side of things. Still, I could barely believe it when they dedicated a WHOLE DAY to raising money for my journey to Boston! This boost from my classmates is amazing. I am extremely grateful to all the people who are helping me and supporting me in lots of ways, especially my high school. So for me it’s HSC, open heart surgery and then, if I’m lucky, uni. You can read more about my journey and help support me in my fundraising:… Thank you.

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