On the 24th June 2011 a very special little boy, Sebastian George Vavasour, was born. A taste for drama from the start, Sebastian kept his mummy and daddy on their toes, becoming very unwell when he was just two weeks old and diagnosed with a condition called dilated cardiomyopathy.

It was later found that his heart problems were due to a rare genetic condition called Barth Syndrome, which causes heart problems, muscle weakness and problems with the immune system.

But Sebastian didn't let this stop him enjoying life. He lived for the moment, and always found a reason to smile, giggle and blow a kiss for any of his many admirers. In the summer of 2013 Sebastian's heart became so weak that he was listed for a heart transplant. While waiting, he spent most of his time in hospital. Which for Sebastian gave him endless hours to do what he loved best; painting, gluing, colouring, sticking. It was frequently remarked on how content he was, given the huge restrictions to his little life. But that was Sebastian, or Bod as he was fondly known as to his family and friends. A charming, courageous, adorable little boy who inspired us with his zest for life.

Heartbreakingly, Sebastian didn't get a second chance with a new heart. His other organs started to fail while he was waiting and on the 11th December 2013, after an extraordinary battle fought with fortitude and grace, he died in the arms of his mummy and daddy aged 2 years 5 months.

Sebastian touched the hearts of so many people in his short life. We want this to continue and in the spirit of Sebastian we would like to raise money to fund scrapbook kits for children and young people in hospital. We had a scrapbook for Sebastian, giving us something to occupy our minds during the many hours spent by his bedside in intensive care, for staff to write in, for us to share our thoughts and feelings. We would love for this to be an opportunity for children and their families to share their own stories.