My lovely neighbours, Craig and Lucy, have two beautiful little girls. The eldest, Violet, was born with a very rare condition that most of you won’t have heard of. Violet suffers from a life limiting syndrome known as Bohring Opitz Syndrome. This affects all aspects of her development and severely impacts her health, nutrition, neurology, physiology, and growth. She has had to undergo many corrective surgeries already in her short life and will no doubt require more in the future. However, despite all of this, Violet is a real fighter and has beaten the odds many times.

Chestnut Tree House is a children's hospice based in Arundel. They have supported Violet's family and offered respite and home care for the last two years. They have state of the art facilities to help look after Violet and provide sensory experiences for her.

There are hundreds of children and young people in your local community who are unlikely to reach adulthood. And even more parents and family members who need care, help and support on their journey, as they don't know how long they will have together.