There is no getting around this blog being the saddest I have posted to date. Earlier this year, a local family in our community, who have a 4 yr old daughter, Isla at our kindy, received the tragic news that their little girl has been diagnosed with Sanfilippo Syndrome.
The syndrome is a progressive disorder, meaning that at birth the children appear typical and do not show signs of the illness. As the disease progresses the children degenerate, losing the ability to speak, walk, eat and eventually lose their lives. Life expectancy is between 12 to 20 years. As devastating as this is for the family, it has become even more heart breaking as they have discovered their younger son Jude, aged 2, also has the disease.
At the moment there is no effective treatment available to “Sanfilippo children”. But around the world there are dedicated scientists, researchers, patient groups and families devoting their lives to changing this. Isla and Jude’s parents, Meg and Al, have joined in the battle at full speed and have recently established the Sanfillippo Children’s Foundation here in Sydney as a means of progressing research and treatment in hope of managing, and potentially, overcoming this condition.
Once I had
learned of Isla and Jude’s diagnosis I had this desperate feeling of having to
do something for this family, as their story seems so close to home. Short of
going back to uni to do a PhD in gene therapy (hmmm maybe not) I decided I
could offer to photograph them regularly as a means of giving their family a
catalogue of precious memories to hold on to. Meg and Al were happy to come
along and meet me for a dawn shoot at our local beach where we captured some
pics together of their gorgeous children and as a family of four. I also invited my lovely video friends, Brad & Kara (from Way Up High Films) along to the shoot to capture some footage of Meg, Al, Isla and Jude just hanging out together. The video is below, along with some of my favourite pics - have a look!
You will see that they are a very normal, albeit very handsome (!) family and the one thing that might strike you is the randomness of this genetic illness meant it really could have happened to any of us. You, me, your sister, your cousin, your friend. But it was Meg and Al who had the 1 in a 150,000 chance of meeting each other and together having children affected by this syndrome. Despite the odds, somehow, it happened.
This story really describes every parent's, every family's, worst nightmare. I urge you to help support this lovely, lovely family in their journey down the Sanfilippo road. The Sanfilippo Children's Foundation website has just gone live, with a big foundation launch party in Manly next week, Friday 15th Nov. Please come along and show your support!
When: 6:30 – 9pm, Friday 15th November
Where: Rooftop Balcony, Ivanhoe Hotel, Manly
Tickets are just $65 and include drinks, canapes and the impeccable company of your fellow Sanfilippo supporters. Our theme is a touch of purple so please interpret this as creatively as you like. There will be exciting prizes up for grabs on the night and lots of opportunity to show your support for our cause.
To buy tickets - https://www.eventbrite.com.au/event/8629554229
Website - www.sanfilippo.org.au
Twitter - @SFCFoundtn