Samatha Lorenz is one of a number of our supporters that will be taking on the Hike for Hope trek on the Larapinta trail In a couple of weeks. She is doing this to honour her sister, Jessie Mei Mei, who has Sanfilippo Syndrome. With the support of her friends and family she has already smashed her fundraising target so the only challenge that remains is the 5 days treking through the desert.
What inspired you to fundraise for the Sanfilippo cause?
Our family are foster carers for a young woman named Jessie Mei Mei. She came to us when she was 6 years old and this year will turn 19! She is the sweetest soul on this planet and she has Sanfilippo. Sadly there is still no treatment let alone a cure for this horrible disease that robs children of their future and families of their children. So I’m here to raise money in the hopes that there will one day be a cure.
How has knowing someone with Sanfilippo changed your view of the world?
Knowing Jessie has made me kinder and she has taught me what true unconditional love is. I can’t imagine a world without her in it, making it softer and sweeter.
What inspires you? What makes you sad?
Jessie Mei Mei is one of the happiest girls I know, despite all of her hurdles and daily pain and if she can find joy in the simplest of things then I am inspired to try to do the same.
I can’t put into words how sad I am to think that Jess will not always be there. As a big sister you assume the little ones will outlive us all but sadly that is not Jessie’s reality. It makes me so sad I can’t fully think about it.
What do you want the wider community to understand about Sanfiilppo?
I would like the wider community to know that Sanfilippo exists! It’s so rare, when I tell people about Jess almost all have never even heard of it let alone known someone suffering from it. If there was more awareness then perhaps there would be more funding for research and in turn treatments and hopefully one day a cure.
Tell us about your event/challenge and why you've decided to do it?
We are completing a 5 day hike on the Larapinta trail to raise money for Sanfilippo. I was looking for an active domestic holiday and stumbled across this fundraising tour. Why not also raise money for a cause that’s so close to my heart while also having a fab holiday??!
What are you looking forward to most about Event/what are you looking forward to the least?
I’m most looking forward to getting out of Sydney and learning about and experiencing a new place/landscape/aboriginal culture.
I’m least looking forward to potentially not showering for 5 days... wwwaaahhhhhh!!!!!
How's your training going?
Training is good. I’m a disability support worker so I’m on my feet all day everyday already and I was always a regular gym goer so not much has changed.
How is your fundraising going?
I’ve hit my target! My beautiful friends and family have kindly all donated and helped me achieve the target so anything over is wonderful
