https://linktr.ee/jacksbutterflies Jack's Butterflies is an Australian Company Limited by Guarantee and a registered charity within Australia. We were created especially for Children and their families who have been diagnosed with a life limiting rare disease or is currently undiagnosed but fits the profile of having a rare disease. We also extend our services to those families who have sadly lost
their child who had a rare disease.
What's in our name...
Jack's Butterflies was created in honour of Jack Gates, a beautiful little boy who was born in March 2011 and was later diagnosed with a very rare condition called Ohtahara Syndrome. Jack opened his mums eyes up to a whole new world. A world that is very scary and isolating and full of devastation. Jack gave her strength and showed her a new and better meaning of life. Jack was her inspiration to helping other families like theirs.
Butterflies are majestic, beautiful and carefree. As a community, we aim to help parents free their children of the cocoon that their diagnosis has placed on them and give them beautiful wings to soar.
What is a Rare Disease...
A rare disease is a life limiting or a chronically debilitating condition that usually starts in childhood/infancy and continues throughout their life. There are no known cures for a rare disease.
There are around 8,000 known rare diseases in the world. To be considered a rare disease, each will affect 0.05% of the population or fewer than 1 in 10,000 people. While the number for each rare disease is very small, collectively they affect 6-8% of the Australian population.
What makes us Unique...
We aim to work with the family as a whole, creating a community to help with the care of their child. Empowering parents with all that they need to not just merely survive the journey but to thrive, so that when they look back, they have a plethora of memorable moments instead of pain, suffering and profound sadness.
Losing a child or learning to live knowing that you will lose your child will always bring profound sadness, depression, anxiety and stress. But hopefully we can fill in the gaps with moments to stand out more.
