Help save Isla and Jude Donnell
I was standing barefoot on the sand in our local park eagerly awaiting the arrival of the Donnell family. As the car pulled up and the doors opened, I heard a lady shout “there’s Rebecca” and a beautiful, fair girl came running up to me with her arms open. “Hi Isla”, I said, “I’m Rebecca and I’ve been looking forward to meeting you.” A warm hug ensued and quickly after a little handsome, dark haired boy came running up, he darted past me as the excitement of a new park was much more appealing than a hug from me. “Hi Jude this is my son Reeve and I’m Rebecca”. He smiled cheekily and continued onto the climbing ladder. Followed closely behind was their mother Megan, exquisitely dressed with a beautiful warm and welcoming smile, this was the lady that I had been admiring from afar for her courage, determination and for giving hope to the children and families affected by the fatal and rare disease Sanfilippo Syndrome.
Devastatingly last year when Megan and her husband Allan were told that both their children Isla, (now 5 years) and Jude (3 years) had Sanfilippo Syndrome, through the overwhelming pain and rivers of tears, they found strength within themselves and support from their amazing friends and family to do something about it. Last October Megan gave up her full time job to start the Sanfilippo Children’s Foundation which is the first Australian patient group dedicated to progressing clinical research in the field of Sanfilippo. Megan has since almost raised $200,000 which is absolutely incredible but still short of their 2.5 million target to help bring potentially life saving medical procedures and treatments to Australian shores and turn hope into a dream come true.
These two children Isla and Jude lit up the park with their energy, radiance and beautiful souls, yet within years or even months, the affects of this brutal disease will consume their bodies and mind, and their life will be cut so short, we cannot let this tragedy happen.
Please help them fund the research and find the gems, by visiting their website http://www.sanfilippo.org.au/ to find out ways you can help. You also still have just over 24 hours to share a kindness story which helps us give an even bigger donation. Please share amongst your friends and family, as the more people that know the better and the more lives that Megan and her amazing tribe can potentially save, now and in the future.
To see more of their remarkable and inspiring story, they will be appearing on The Project at 6.30 pm this evening on Channel Ten.