2022 Christmas Appeal – The Gift of Time
GIVE THE GIFT OF TIME THIS CHRISTMAS
Time Together is Precious.
Help us give children like Jarrah more Christmases with his family.
Jarrah was diagnosed with a rare neurodegenerative disease, known as Ataxia-Telangiectasia (A-T), just last year. People with A-T are expected t be wheelchair bound by the age of 10, and have a life expectancy of around 25 years.
Jarrah is one of 40 children from throughout Australia who have been diagnosed with the ultra-rare condition, A-T. They are currently enrolled in the trial at Wesley Research Institute. This world-first clinical trial holds hope that finally, there may be a treatment in sight that could be the key to prolonging their lives. Mum Casey says, ‘we are all praying for a miracle’.
Special moments like Christmas make Casey realise just how precious her time with Jarrah really is.
“We look at Jarrah’s cheeky smile and nature every day and still find it hard to believe his diagnosis is real. But then you read about it and it breaks our hearts all over again. If we are lucky and we keep him healthy, he will live until 18-20 years of age, the rest is unknown.”
Research is the best and only hope we have.Please donate today to support groundbreaking clinical trials that could change the lives of children with this rare and devastating disease and give families like Jarrah’s more Christmases together.
Sarah Harriman is the A-T Clinical Trial Coordinator. As she explains, our bodies normally turn the nutrients in our cells (such as sugars, fats and proteins) into energy, which we need in order to function – move, talk, breathe. But this doesn’t happen for people with A-T.
A dietary fat supplement called triheptanoin, otherwise known as C7, has the potential to change this by boosting energy metabolism and significantly improving neurological symptoms.
“We’re taking a sample of people’s nose cells, and we’re seeing what happens to those cells when taking C7. If we see that C7 is helping the cells, then we know it can support the function of those cells. That includes things like walking and speaking.”
Like all our research, this clinical trial relies on the goodwill and generosity of our supporters to see it move into Phase 3. If successful, it could uncover a new and effective treatment for people with A-T, including children like Jarrah.
Casey doesn’t yet know if the clinical trial has worked for her baby boy.
But she has hope.
Hope in research. And hope for more time.
“We always thought our two older boys would take over our farm in Victoria. Jarrah’s not going to be able to do that anymore. That was really confronting. But at least this trial has given us hope that we will be able to have Jarrah for longer.”