The Sanfilippo Children’s Foundation has launched a campaign of HOPE today for siblings Isla and Jude.
The campaign presents the song This Woman’s Work, featuring Il Divo’s Sébastien Izambard and 15 Australian artists, which was recorded to help raise money to save the brother and sister who suffer from Sanfilippo Syndrome. The campaign will also help save the lives of other children living with this terrible condition.
All donations and sale proceeds from the song will go towards a medical trial and treatment.
You can use the tagline #hopeforislaandjude to help promote the campaign.
Previously, Mamamia wrote:
After receiving the shattering news that both her children had a rare genetic disease called Sanfilippo Syndrome, Megan Donnell and her husband Allan dedicated their lives to increasing awareness and funds to help find a cure for this devastating disease.
They have since founded the Sanfilippo Children’s Foundation that aims to drive research and enable access to effective treatments to improve the quality of life for children affected by the fatal childhood disease.
By MEGAN DONNELL
Today I accidentally wore mascara.
It was a typical suburban family morning scene – I had one pre-schooler climbing my leg while the other was no doubt creating art on a nearby wall. My husband was banging on the bathroom door as I had parked him in and he had an early meeting. My hair was half done, my outfit half on, and before I had time to think about it I reached for that little wand and began coating my lashes. For that split second I was back in the ‘time before’. When wearing mascara was a normal part of life, when visits to the doctor meant someone had a cold or it was immunisation time, when we used to wonder what kind of people our children would grow up to become. But the ‘time before’ is no more, it evaporated in a split second in a small room in a big hospital last year. And now mascara is definitely off the agenda.
Let me explain.
When our son, Jude, was born in 2011 we felt our family was complete. Big sister, Isla, who was just under two at the time, fell in love with Jude immediately as did we all. We considered ourselves blessed having two happy, healthy children and we had such hope for our future. The next two years were chaotic as anyone with a young family will understand. Both kids went about their social, well-adjusted business and life was good.