Our Moon's Mission We are Genetic Cures for Kids

Into the Sunshine Coast spotlight to shine a light on rare diseases and find a cure for SPG56

Quiet Sunday mornings read a little differently now as a family stepping into the public eye. We are forging a new research foundation ahead. It’s called Genetic Cures for Kids Inc – or GC4K- and we are funding research for rare disease, the first campaign being ‘Our Moon’s Mission’ to cure SPG56.

Reading our own family’s rare disease story in the local magazine My Weekly Preview fills us with gratitude. We are being given the attention we need to share our genetic research mission and this fortifies us for this long but focussed campaign to cure SPG56. But it doesn’t come without emotional toll.

Reading or retelling any traumatic experience brings it all back to your heart, head and soul like you’re reliving it in that moment. Every time.
In an instant you realise that helpless fear of losing your child, that you pushed aside so many times before is right there again, wrapping you up in its boa constrictor’s embrace. Somehow you wriggle out every time, but just how, is different every time.

This morning has been teary for us adults as our story goes public in the Sunshine Coast, but this washes away life’s distractions and resets our hearts. It’s time for backyard soccer, “swims” to cool off from the summer heat, and a bit of watching the grass grow, as we prepare for our busy year ahead- to fund and find a cure for SPG56.

Thank you to Ingrid Nelson for your empathy and heartfelt storytelling – please read the story here.

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