Who Is The Little Girl With EB And Still Smiles?
It is amazing and encouraging how Australians come together in a time of need and I have seen this twice now, having attended the last 2 Melbourne Cotton Balls.
On Saturday night I was blown away at the time, effort and generosity of hundreds of people. The Cotton Ball has grown into a huge event, all thanks to an amazing group who have cared. According to Sam Kekovich, the MC of the night, Australians are not great receivers of charity, but love to give. And they raised over $400,000.
Friends of ours told us of their friends, Cory and Kelly, who have 4 children, the youngest Tilly (6), being born with a rare disease which is cruel, leaves her in excruciating pain compared to 3rd degree burns, and has no government funding or a cure.
According to Wikipedia, Epidermolysis bullosa (EB) is a group of inherited connective tissues diseases that cause blisters in the skin and mocusal membranes. It is a result of a defect in anchoring between the epidermis and dermis, resulting in friction and skin fragility. Its severity ranges from mild to lethal.
You can read more about Tilly, who is a beautiful little girl who lives with horrific pain daily, but always manages a smile for everyone in this beautiful Herald Sun article, where Hamish McLachlan interviews Tilly.
After reading the article, witnessing what Tilly’s daily life is like, and the life of her parents and siblings, I wanted to share this article with you, because from something so sad and cruel, created inspiration.
The Cotton ball is a gala event, raising vital funds for the EB community, with 10% of funds raised donated to DEBRA Australia and the remaining 90% of fund dedicated to Australia’s new EB Research Foundation.
Debra Australia Ltd. is a not for profit organisation, run by volunteers who work tirelessly to support those, like little Tilly, living with Epidermolysis Bullosa (EB). They are working tirelessly now, not only to support, but now to find a cure with the new EB Research Foundation. Let’s hope this is soon, for the sake of Tilly and everyone with EB.
Thank you so much for reading. Click the links above, or here to the EB Research Foundation Facebook page for more information, and where to donate if you can.
I know the next time I feel there is a reason not to smile, I will think of Tilly and know I always find one.