Youth at Heart

General information

Alice was born with a complex and life limiting congenital cardiac condition, transposition, which caused her blood circulatory system to flow incorrectly. Alice required multiple significant operations and lengthy hospital visits to enable her to live. She bravely battled daily with very low levels of oxygen, and associated medical challenges which required immense courage and effort – every moment was like climbing a mountain, and she was always desperately fatigued and cyanosed. Alice craved normality, packing so much into her very full life. She was a very special and much loved gift for us all, who always thought of others before herself. Through our on-going fear of never knowing what each day was going to bring, and how long she had to live, Alice taught us about what was really important in life, to value family and friends, and to truly treasure life and health.
At the time of her unexpected death Alice was determined to start her own charity. She was aiming to address the current gap in service provision for young people born with complex congenital cardiac disease, who are now, thanks to advances in medical science, surviving into their teens and young adulthood, but with little support to remain in mainstream education, seek employment, or gain sufficient independence to have a social life!
We take the gift of good health for our children for granted – but in fact a healthy baby is a miracle, and there are thousands of young people, and their families, battling to come to terms and cope with, life limiting, or terminal, heart conditions. Despite looking healthy and able bodied Alice’s heart condition restricted normality and everything she attempted was an agonising frustrating struggle.
After 22 years of battling on her behalf, there is little more we can now do for Alice, apart from realise her ambition to help other young people to cope. Following initial discussions with the Bristol Heart Institute and with the support of family and friends, we intend to try and fundraise for a pilot post of a Cardiac Youth Worker, through the charity Alice wanted to start – YOUTH@HEART. The Youth Worker’s role would be to specifically support young people with congenital cardiac disease to access life more successfully – to help with educational opportunities and employment, to meet them in hospital, at outreach clinics, and in the community, offering emotional support, advice and continuity of care. To facilitate understanding of the impact of cardiac disease for relationships, enable transition into adulthood and help with life management.
We would also like to increase awareness of the challenges that congenital cardiac disease imposes, and improve training opportunities for non medical professionals coming into contact with these young people. Our final aim through the youth worker’s role is to ensure that young people’s end of life choices are fully appreciated and followed.