Carer Daniela Negreta Haschke is taking on a 5km Foam Fest challenge this November to raise funds for the Foundation in the name of Isla and Jude Donnell. Here she shares why she loves the work she does and how she is motivated to make a difference to the lives of children battling the unconscionable condition, and childhood dementia, Sanfilippo Syndrome.
Fingers and toes crossed the pandemic will be behind us by November. Good luck Daniela, and thank you for all that you do!
What inspired you to fundraise for the Sanfilippo cause?
"Isla and Jude, of course! Working with them has absolutely changed my perspective on life and I love how the foundation promotes fundraising through sporty events."
How has caring for a child with a terminal illness like Sanfilippo changed your view of the world?
"It's very intense, to say the least. A lot of times I feel like I'm not prepared for what's to come, but I'm determined to work with them until the end and my goal is to make their lives better, one day at a time. If I get to see a smile whenever I'm with them, my day is made!"
What attracted you to such a role?
"I was studying to become a support worker at the time and even though I've had the pleasure of supporting adults with disabilities, I've always thought that working with children was my true passion. I wasn't aware of Sanfilippo and it was the first time I had come across it, but learning about Isla and Jude's story moved me and it was a challenge I knew I wanted to take on."
What inspires you? What makes you sad?
"Kindness inspires me. This year has been rough for everyone and seeing people be kind to each other makes me smile. On the other hand, it breaks my heart when I see people who don't empathise or take the time to understand the challenges of having a disability or caring for someone with one."
What do you want the wider community to understand about Sanfilippo?
"I'd love people to take the time to listen to the stories behind the families that are fighting Sanfilippo. It puts things into perspective and helps us realise that we take many things in life for granted."
Tell us about your event/challenge and why you've decided to do it?
"The 5k Foam fest is a fun run that consists of 22 obstacles, which include an inflatable waterslide, hurdles, several mud pits and a LOT of foam! It's basically a big fun challenge. I wanted to do it last year but I was wrecked after doing the Pub2Pub, it was my first run ever and I couldn't start training again after doing it in August. Running has never been a hobby of mine and even though I exercise regularly, training for a run is super demanding. Working with sore legs does not make supporting Isla and Jude any easier!"
How's your training going?
"I signed up for the run recently and I'm planning to start training over the next couple of weeks. Also, I fell on my ankles around two months ago and the recovery has certainly been slow. 5k may not seem like that much, but training and running in November is definitely going to be a challenge for me!"