New charity offers support to families of children with rare diseases

A NORTH Brisbane woman has created a charity to support families of children with rare diseases after spending seven years of sleepless nights raising a son who was not expected to live more than a few weeks.

Rachel Gates, pictured with her seven-year-old son Jack, has started a charity which aims to support families of children with rare diseases. Picture: AAP/Jono Searle

A CHERMSIDE West woman has created a charity to support families of children with rare diseases.

Rachel Gates said the ­vision for Jack’s Butterflies was to ensure no family felt alone in their daily struggles to care for a child with a life limiting disease.

A mother of six, Mrs Gates understands the hardships of keeping a child alive and a family together.

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Her son Jack was born in 2011 with Ohtahara ­Syndrome, a rare form of epilepsy.

“There’s not a lot known about Ohtahara Syndrome and we were told we would only have days or weeks with him,” Mrs Gates said.

“Jack can have hundreds of seizures a day and all different types. We’ve tried nearly all the anti seizure meds; we keep trying different ones and different combinations of different ones.”

Mrs Gates said Jack had the development of a newborn baby; he doesn’t speak and he has a vision impairment.

“However he can laugh and smile. He can hear us and knows our voices.”

Mrs Gates said the relationship Jack had with his siblings — ranging from three to 17 years, including twin sister Emily — was “so beautiful”.

Siblings (clockwise from left) Molly, Emily, Caitlin, Lauren and Bradley have a beautiful relationship with their brother Jack. Picture: AAP/Jono Searle

“They really are the most incredible children. They all know how to treat him. They know about his seizures and how to manage them. We’ve been very honest with them from day one.

“As a family we are really close. We’ve gone through periods where (husband) Paul and I have to be strong not only for us but for them.

“We suffer from severe sleep deprivation and there have been many really hard periods but we’ve always come out really strong ­together.

“The kids have had to grow up really quickly; they live a very adult life with adult emotions.”

Mrs Gates said she started Jack’s Butterflies to help other families.

“There are some great organisations out there that help families with cancer and heart diseases ... and there are organisations who will take you under their wing but you don’t feel you belong because their focus is on something else.

“I started to learn more about rare diseases. The last thing I read was there are 400,000 children with a rare disease in Australia.

“With rare and undiagnosed diseases you are usually told there are no cures and most will pass away while they’re children, which is why there aren’t many adults with these conditions.

“We need to gather all these families up under one umbrella.

“I really want to build the profile of what rare disease is, to bring all these families together in the community so they feel supported and get the same sort of care and awareness.

Jack shares a laugh with his mother Rachel Gates. Picture: AAP/Jono Searle

“Family support is the most important. We are always in hospitals and I’m so busy trying to put all Jack’s stuff together I don’t think about myself.

“It could be two or three days before my husband can get stuff to me. I’ve gone five days without a shower and gone a whole week without brushing my teeth.

“You just don’t care about yourself as you’re focused on your child.

“Once we know a family goes into hospital our charity will bring them a care pack filled with toiletries and other necessities.

“It’s so they can concentrate on their children and know someone will support them.”

The charity also aims to provide meals and snacks to families in hospital and to run youth programs with an emphasis on teaching compassion and empathy.

“This year it’s all about trying to build a support base for the charity and start fundraising,” Mrs Gates said.

“I’ve been working on this for two and a half years. We went live last year with our name and we’re trying to get sponsors.

“Most of these children don’t reach the normal milestones and we’re trying to replace milestones with moments.

“I feel that I’m lucky that I still have Jack. I see families who lose children and so many lose themselves and their grief lasts forever.

“I would rather have Jack the way he is than not at all and he has five siblings who adore him.

“I just want to teach Australia that these families exist, we are normal, not families you need to be sad for.”

For information visit jacksbutterflies.com.au

Event.

Wednesday, September 26: Free movie date for families of children with a rare disease. 4-6.30pm. Location will be confirmed on registration (See Jack’s Butterflies on Facebook)