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.

An Early Bird and Gold sponsor for the Brisbane Disability Connection Expo 2023, 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. Jack 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.

One of Jack’s Butterflies goals is to raise the profile of what a rare disease is within the community. They want to build the support network for families and do what they can to aid medical teams as they fight daily to help their children.

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.

Jack’s Butterflies is a charity paving the way for awareness and support of children with rare disease and their families in supplying hospital stay packs to parents of children who are emergency hospital admissions. They provide these parents with healthy and nutritious meals whilst their children are hospitalised and run support groups for all those affected by rare diseases.

Connect with the team from Jack’s Butterflies at the Brisbane Disability Connection Expo, Friday 3 and Saturday 4 March 2023 at the Brisbane Convention & Exhibition Centre.