Walking for a top cause
DETERMINATION to raise awareness about a rare disease affecting his daughter will take a Coffs Coast man and his mate on a 240km walk from Coffs Harbour to Byron Bay.
Local residents Jamahl Waddington and Ashley Lane are aiming to raise $20,000 for the Captain Courageous Foundation when they embark on the mission on April 17.
The Captain Courageous Foundation supports people diagnosed with a rare blood disease known as Diamond Blackfan Anaemia - a disorder of the bone marrow affecting around 800 people worldwide.
It's a cause close to the heart for Jamahl, whose daughter Gabby requires monthly blood transfusions having been diagnosed with the disease in 2003.
"Whilst Gabrielle appears on the outside to be a beautiful vibrant young girl, she lives with DBA daily," Jamahl said.
"She has monthly blood transfusions to stay alive, hundreds over her lifetime so far and has had more trips to ICU than most people have set foot in a hospital."
Gabby was diagnosed with the disease after her twin sister Jasmine died in 2013 from pneumococcal infection.
Jamahl said Gabby was rushed to hospital with what was feared to be a similar life threatening infection.
"We've held her many times as doctors have told us that she may not last the night, but she's here today," Jamahl said.
"She is a confident, beautiful young girl and has defied the most enormous odds."
Money raised for Captain Courageous has meant 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.
Jamahl said the charity walk was about raising awareness to help find a cure.
"Whilst it sounded like a good idea at the time, walking along beach sand, up and down cliffs and through national parks for seven days will no doubt be challenging," he said.
"Nevertheless, we are determined to complete the walk in seen days, determined to raise more than $20,000 for Captain Courageous and determined to play our part in finding a cure for DBA.
"This is our gift for Gab"
To donate to the cause, visit give.everydayhero.com/au/gift-for-gab