Alice’s Story (April 2010)

I was born with a rare and complex congenital heart condition. Doctors discovered that my heart was transposed thereby pumping deoxygenated blood around my body, rather than oxygenated. They were initially unsure that I would live through the first night of my life, however I did. Family, friends, doctors and nurses, then watched and helped me battle against the odds to survive not just past my seventh birthday, (The maximum length of time I was given to live) but on to celebrate my 18^th earlier this year.

With help I managed to remain in mainstream education, although it was an exceptional challenge for me to try and live a “normal” life as my limited oxygen levels make me feel permanently exhausted – you would experience the same sensation if you were to try and live at the top of Mount Everest!

As a child I required ongoing surgical intervention in order to live. Some of these have been major operations however the majority of them have been operations to look at my heart and how everything is coping.  Unfortunately, surgery to protect one organ, often has a negative impact on another part of the body. These vital interventions often left me with additional complications and I developed huge fear of all surgical and hospital procedures. As a result I have elected not to have any further surgery.

At the age of 17, I left school with 4 GCSE’s above a C grade. I am now studying Business Administration.

I have found my life experiences frustrating and difficult, and felt incredibly isolated. Although there is high awareness of disability I have found there isn’t a real understanding of the impact of it, not just on the patient, but also on their families, friends and carers. These experiences have made me determined to make a difference for those who have been dealt a similar challenge.

I have been inspired to create Youth @ Heart, a charity for patients with heart problems, particularly congenital, their families and friends, and members of the public. I hope that it will make people more aware of what it actually means to live with heart disease and congenital problems, increase understanding and become a forum to exchange ideas, signpost and facilitate support. I want to offer something that wasn’t available for me, and will help the 1000’s of children, and young people struggling to cope with this chronic restrictive disability.

Growing up hasn’t been easy. This charity will rely on the generosity of strangers who are willing to help and enrich the lives of others who haven’t had the same chances as they have had. We all take good health in our children for granted, for so many this is not a gift that they have been given.

Thank You for taking the time to read this, and thank you for helping.

Sadly Alice lost her battle and died 25th June 2013, we aim to fulfil Alice’s dream and continue to run the charity she was inspired to create.