Stacey Beddows

I am raising money to help the Goldenhar Support Group which is an amazing charity, but due to being generally un-heard of, the funds limit how much they are able to help the people who suffer from Goldenhar and their families, every little amount with make a difference.

I am the very proud god-mother of a fabulous 5 year old girl called Briar who suffers from Goldenhar. She has amazed many specialists with her determination and ability to overcome the endless operations she has had and is still yet to have, as well as proving them wrong with lots of daily things they said she would never be able to do. She is such an inspiration and knowing I can help her and other children by doing this challenge will be my motivation.

Goldenhar syndrome (also known as Oculo-Auriculo-Vertebral (OAV) syndrome, is a congenital condition that is associated with abnormalities of the head and the bones of the spinal column, as well as internal organs such as the heart, kidneys and lungs. Th... more

I am raising money to help the Goldenhar Support Group which is an amazing charity, but due to being generally un-heard of, the funds limit how much they are able to help the people who suffer from Goldenhar and their families, every little amount with make a difference.

I am the very proud god-mother of a fabulous 5 year old girl called Briar who suffers from Goldenhar. She has amazed many specialists with her determination and ability to overcome the endless operations she has had and is still yet to have, as well as proving them wrong with lots of daily things they said she would never be able to do. She is such an inspiration and knowing I can help her and other children by doing this challenge will be my motivation.

Goldenhar syndrome (also known as Oculo-Auriculo-Vertebral (OAV) syndrome, is a congenital condition that is associated with abnormalities of the head and the bones of the spinal column, as well as internal organs such as the heart, kidneys and lungs. The abnormalities of the head can include differences with the eyes, ears, facial bones, and mouth. These differences are extremely variable in severity. The exact cause of Goldenhar syndrome remains unknown.

Treatment is usually confined to such surgical intervention as may be necessary to help the child to develop e.g. jaw distraction/bone grafts, occular dermoid debulking, repairing cleft palate/lip, repairing heart malformations, spinal surgery. Hearing aids placed in one or both ears.

Please help support this charity.