We are seeking your support for our Coffs Harbour to Byron Bay walk (more than 200kms) to raise money for the Captain Courageous Foundation and help a very special and brave girl. The story below, and short 2 minute movie (click on the following link https://www.dropbox.com/l/s/yQi1nclIQw1ojJb43vMGnn) provide a background to Gabrielle's life and the Foundation. We urge you to watch the movie and read the words below and support us in any way you can by making a donation to our walk.
A little more than thirteen years ago on Christmas Eve 2002, we welcomed the most precious identical twins girls into the world. At 32 weeks gestation, they were small, however at 2 pound 7 ounces and 3 pound 6 ounces respectively, we knew that something more was going on. Several short months later we would learn that Gabrielle and Jasmine had a rare blood disease known as Diamond Blackfan Anaemia (DBA) – only 800 cases known in the world and we had two!
Five months later Jasmine would pass away, due to a pneumococcal infection barely more than 12 hours after thinking something was wrong. DBA rendered her helpless to such an awful infection. After the most harrowing 12 hours any parent could imagine, I held my precious Jasmine in my arms as she drew her last breath. As we returned home that morning after Jasmine’s passing, Gabrielle was rushed to hospital with what was feared to be a similar life threatening infection.
Thirteen years later, Gabrielle is now a confident, beautiful young girl. She’s defied the most enormous odds. We’ve held her many times as doctors have told us that she may not last the night, but she's here today.
Whilst Gabrielle appears on the outside to be a beautiful vibrant young girl, she lives with DBA daily. She has monthly blood transfusions to stay alive, hundreds over her lifetime so far and has had more trips to ICU in her lifetime than most people have set foot in a hospital.
Those that know Gabrielle will know her spirit is remarkable, her strength is ridiculous and her courage in the face of DBA, an inspiration to anyone who knows her story. Yet in the face of despair and sometimes hopelessness, a light at the end of an apparently endless tunnel has appeared, entirely due to the efforts of the Captain Courageous Foundation. With money raised to date by Captain Courageous, patient clinical trials of a new drug are a possibility this year. This drug could provide not only treatment for DBA but also for other blood diseases such as leukaemia. That said, these trials and other amazing work being done by researchers all around the world always need more funds to continue in the quest to find a cure.
So this is why one of my best mates and I have decided to go for a walk along the beach – for more than 200km’s! We will be walking from Coffs Harbour to Byron Bay from 17 April to 23 April 2016 to raise crucial funds for Captain Courageous. Whilst it sounded like a good idea at the time, walking along beach sand, up and down cliffs and through national parks 7-10hrs a day for 7 days on end will no doubt be extremely challenging.
Nevertheless, we are determined to complete the walk in 7 days, determined to raise more than $20,000 for Captain Courageous and determined to play our part in finding a cure for DBA and other blood diseases. We hope you can support us in any way you can by making a donation to our walk.
This is our 'Gift for Gab'.