Sydneys Childrens Hospital at Westmead has stumbled upon a remarkable treatment for a group of young patients with a rare neurological disorder.<\/p>\n
Its easy to source, perfectly safe and cheap. In fact, most of us already consume it every day in our cup of coffee.<\/p>\n
Put simply its caffeine - and its helping patients like four-year-old Grace Maly.<\/p>\n
At around four-months-old, a virus lead to a sudden change in Graces development.<\/p>\n
Her mother Emma describes how she went floppy.<\/p>\n
Emma says, We knew something wasnt right because she couldnt sit up. She wasnt reaching her milestones.<\/p>\n
At first, it was a mystery but after years of searching, Grace was diagnosed with a mutation in the ADCY5 gene. A movement disorder prevents her from independently sitting or standing.<\/p>\n
Emma says, ever since life has been very different. Its been very up and down. An emotional roller coaster.<\/p>\n
More on 7NEWS.com.au<\/p>\n
One of hardest impacts is seizures, up to 10 times a day.<\/p>\n
Until, the family heard about an unlikely new treatment - caffeine.<\/p>\n
Grace takes three doses of prescription caffeine each day and her father Adam describes the results as amazing.<\/p>\n
We knew something wasnt right because she couldnt sit up. She wasnt reaching her milestones.<\/p>\n
Grace can now feed herself a sandwich by herself. Play Duplo with her brothers. So its really wonderful.<\/p>\n
Other families are benefiting too under supervision at The Childrens Hospital at Westmead.<\/p>\n
Dr Shekeeb Mohammad says this is what medical professionals dream about, It is immensely satisfying and it is thrilling to be able to see a change in our patients.<\/p>\n
Previously, physical therapy has been the only other form of treatment.<\/p>\n
The caffeine therapy was in fact an accidental discovery made in France.<\/p>\n
A patient there with the condition stopped drinking his usual daily coffee and his symptoms suddenly became far worse.<\/p>\n
Older patients like Francesca Risi have followed his lead, drinking straight espresso.<\/p>\n
Her mother Angelina says Its amazing for us to see that something so simple can help her put her hand up in class in time to answer a question.<\/p>\n
Francescas father Adrian says he just wants his daughter to live a happy life, It gives us probably hope that there are more and more things to be discovered.<\/p>\n
Exactly why the caffeine works is still a mystery.<\/p>\n
So today, on Rare Diseases Day, the families are sharing their stories, hoping for more answers and maybe one day a cure.<\/p>\n
If youd like to help, please follow the links below:<\/p>\n
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\nCaffeine helping to treat young patients in Sydney with neurological disorders - 7NEWS.com.au<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"