We recognise that 85% of children born with CHD now survive into adulthood.
We aim to offer support, awareness and opportunity to teenagers, young adults (16 to 24) and their families in Gloucestershire (across South Wales and the South West of England), born with Congenital Heart Disease (CHD).
We also aim to raise public understanding of complex CHD and its impact on the young person and their family.
These young people battle daily with life limiting and terminal illness. Their emotional health affects their physical health. Our support will help enable them to have greater access to life opportunities. Your support will help us achieve this.
We have employed an Adult Congenital Heart Disease Youth Worker, who will undertake a liaison role between the young person, medical professionals and community provision.
The Youth Worker’s focus will be the young person’s holistic needs and support for their emotional wellbeing.
It was Alice’s transition from children’s to adult care that initiated the Youth@Heart journey
Just a few hours after her birth in April 1991, Alice was diagnosed with complex Congenital Heart Disease. Despite the numerous medical interventions, hospital stays and limitations imposed by her condition, Alice refused to be defined by her heart condition and was determined from a young age to live life to the full.
Alice struggled with the emotional challenges caused by her condition. The acute levels of fear induced by living with an open ended terminal illness, not knowing how, or when she would die. The very real anxiety she felt about undertaking medical procedures with uncertain outcomes. Her craving of normality and attempts to access life in the same way as her peers, drove us all and made us determined to do something to help.
After 22 years of fighting on her behalf, there is now nothing more we can do for Alice, apart from realise her ambition, to make a difference to the lives of others in a similar position.
9 April 1991 - 25 June 2013
Supporting young people aged 16-24 (and their families), living with Congenital Heart Disease, in South Wales and the South West.
We would also like to increase awareness and understanding of the challenges that living with CHD imposes on young people and their families. In addition improve training opportunities for non medical professionals coming into contact with these young people.
1 in every 110 babies are born with CHD. Thanks to advances in medical science, over 85% are living into adulthood. There are currently 600 young people in the South West with complex CHD.
We have an Adult Congenital Heart Disease Youth Worker who will facilitate opportunities for CHD patients helping them to achieve their potential. Get in touch to find out more.