By 96five Friday 12 Jul 201996five Breakfast
Jack and Rachel. Photo ‘Quest Newspapers’
You may never look at a butterfly in the same way after hearing Jack’s story.
Brisbane boy Jack Gates, the fourth of six children, was born with Ohtahara Syndrome in 2011.
He is a ‘rare kid’; that is a child with a rare disease. There are more than 8,000 Australian children that fit that category.
Ohtahara Syndrome is a neurological disorder characterized by seizures and there are only a handful of Australian kids with the same condition as Jack’s, according to his mum Rachel Gates.
It’s like their disease has cocooned them.
Why butterflies? Because it’s how some grieving families see their child, says Rachel.
“When they see a butterfly, they say, ‘Oh my child has visited me; they’re carefree and off playing … all the things they couldn’t do when they were on earth’.
“It’s like their disease has cocooned them,” says Rachel. “I want to help families to find their child’s butterfly wings.”
Jack’s Butterflies helps to create memories
“It’s all about creating memories and moments for these families. Once they do lose their child, when they look back on their journey it’s not just profound sadness and hard and difficult and sleepless days; there are moments of joy in between.”
For Rachel, her journey moved her to establish Jack’s Butterflies. She has a deep understanding of the hardships, needs and wants of keeping a child alive and a family together.
It’s all about creating memories and moments for these families.
But the Gates family still has precious moments with Jack. “We know he can hear; he loves his siblings. He hears me, his face lights up and he smiles,” she says.
She wants Jack’s Butterflies to be the umbrella organisation that supports children with a rare disease … and their families.
National launch for Jack’s Butterflies
Which is why Jack’s Butterflies is about to launch as an Australia-wide support service.
Rachel says it will offer services and assistance not only to help ‘rare kids’ 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”.
This will include practical support such as hospital-stay packs for parents as well as running support groups for those affected by rare diseases.
Want to help?
Donate to Jack’s Butterflies and become a member.