Founded in 2017 Jack’s Butterflies is a new charity in Australia. It is registered with the ACNC and endorsed by the ATO; thereby offering tax deductible donations to our supporters. We are set to officially launch our services in Queensland and South Australia this year, with a roll out to other Australian states in the next four years.
The idea of Jack’s Butterflies first took flight through a personal understanding of the hardships, needs and wants of keeping a child alive and a family together.
Jack's Butterflies was set up by Rachel Gates as a result of the journey she and her family have made since the birth of her son, Jack, who was born with Ohtahara Syndrome in 2011. The Gates Family's own suffering and difficulties inspired them to help others, to provide them with the resources, tools and support networks that they were so desperate for themselves.
Jack’s Butterflies’ range of services and assistance looks to not just assist rare disease children and their families with everyday challenges, but also to equip them with the support to extend their lives beyond the daily isolation and confines of hospitals, social services and their own homes. Our eventual goal is to provide a comprehensive network of services geared towards improving quality of lives and the relationships that surround them.
SO WHAT IS A RARE DISEASE?
Rare Disease is not a common phrase. Ironically rare diseases are actually common. Current figures suggest that more than 8,000 children and more than 1.5 million adults in Australia are affected by a rare disease. However, many families aren’t even aware that their loved one falls under the label of having a rare disease.
One of our goals is to raise the profile of what a rare disease is within the community. We want to build the support network for these families and do what we can to aid our medical teams as they fight daily to help our children.
When you look at the cancer community there are hundreds if not thousands of different types of cancers, but they all come under the one umbrella for awareness and support. Our aim is to do the same for rare diseases.
The symptoms of a rare disease are often discovered just after birth/early childhood. Most rare diseases have no cure, life expectancy is significantly reduced and a large number of these children sadly pass away during childhood. As a result of this blunt reality, families and carers of these children experience significant psychological stress due to stigmatisation, social isolation, unemployment, diagnostic delays, lack of information and difficulty accessing appropriate healthcare. This, combined with the unknowing and constant state of limbo waiting for the sad realisation of the inevitable, provides for a constant state of grief and fear for the impending loss of a beloved child.
Jack’s Butterflies' initial roll out of programs will be geared towards providing assistance and support to rare disease families. This will include supplying hospital stay packs to parents of children who are emergency hospital admissions, providing these parents with healthy and nutritious meals whilst their children are hospitalised and running support groups for all those affected by rare diseases.
JB's ~ Rare Kids of Australia
JB's ~ Rare Kids ACT
JB's ~ Rare Kids NSW
JB's ~ Rare Kids NT
JB's ~ Rare Kids QLD
JB's ~ Rare Kids SA
JB's ~ Rare Kids TAS
JB's ~ Rare Kids VIC
JB's ~ Rare Kids WA
Opening the door from the isolation of living with a rare disease
"Life isn't a matter of milestones,
but of moments"
Rose F Kennedy