The inspiration for KEEPTHEBEAT came following Albert Ellis Tansey being diagnosed with Hypoplastic Left Heart Syndrome at four days old in August 2009.
The experiences of Albert and his parents meant they felt there was room for a new charity to focus on HLHS. At 8 months old Albert had his second month long stay at Glenfield Hospital in Leicester, for his stage 2 Norwood procedure. It was then that Alberts parents Annita & Adam met Francesca & Christer Larsson, and their daughter Sofia Larsson.
Sofia was diagnosed with a number of CHD’s at 4 weeks old - Atrial Septal Defect (ASD), Large Ventricular Septal Defect (VSD) and Partial Anomalous Pulmonary Venous Drainage (PAPVD). Sofias stay in hospitals lasted a total of 13 weeks and during that time underwent 2 open heart surgeries and still has future surgeries ahead of her.
During these stays Sofia and Albert became inseparable, following each other to the operating theatre and then in and out of intensive care and the children’s ward.
During the time the parents shared their experiences, supported each other and then decided to work together to ensure that KEEPTHEBEAT made a difference.