From the day Jack and his twin sister Emily were born, Rachel Gates and her husband Paul knew there was something wrong with their boy.


When he was just four days old, the Brisbane mum’s fears were confirmed. Jack was diagnosed with Ohtahara syndrome, a debilitating neurological disorder which prevents kids from developing past the stage of a newborn baby.


In Jack’s case, it also means enduring up to 100 seizures a day.


The condition is extremely rare. Jack is just one of three known cases of children in Australia who are currently living with the disorder – 80% die before they’re two years of age.


But incredibly, Jack turned five on March 5th.




“They said he would never leave the hospital but we didn’t accept that,” mum-of-six Rachel told Kidspot. “We wanted him to experience life at home with his loving family around him rather than the sterile walls of a hospital.”


The next year was hell – not knowing if each day would be the last with their darling boy.


“He never left my arms because I wanted my love to be the last thing he knew,” she says. “It was hard because I couldn’t be a mum to my other children in the true sense of the word.”


Fortunately, Jack’s twin sister Emily was a very relaxed baby, requiring little attention.


“If I was breastfeeding her and Jack would have a seizure, I would have to put her down and go to Jack and she wouldn’t cry," she said. "I think she knew that her brother was special.”



Emily is still a huge help to her mum. Despite the fact that Jack can't speak, little Emily has nurtured the most wonderful bond with her twin.


“She always says Jack is her best friend. When we sit at the dinner table and ask everyone how their day is, she always asks Jack and then speaks for him,” said Rachel.


“It’s not a traditional twin experience but she has created her own twin experience.”


While Emily is a wonder, Rachel worries about not having the time to spend with her and her older siblings, Caitlin (14), Bradley (12) and Lauren (8), and 16-month-old baby sister Molly.


“We don’t want them to look back on life before Jack and think they had a life and feel that since he was born, they haven’t had much of a life,” she said.



“So we have the kids in lots of activities at the moment and have gone a bit too far the other way, so we are trying to find the right balance.”


And she admits that the stress of worrying about Jack sometimes takes its toll.


“Some days I just can’t breathe – it’s just so debilitating that I want to just crawl up in a ball,” she said. “I still get angry that Jack doesn’t get to live the life that he wants – I feel completely powerless.”


But Rachel is determined to give her boy the best life he can possibly have. That means keeping him out of hospital as much as she can.


The family have been using a SATS monitor to keep track of Jack’s oxygen levels. The machine tells them when he needs more.



But the machine is getting old, so the readings is not as accurate as it once was.


That’s why Rachel’s  cousin's 11-year-old daughter Ashley Wojcik has started up a mycause page to help with buying a new one.


“As an added bonus, when I have hit $1,500, I will dye my long blonde hair purple – the colour that represents Ohtahara syndrome,” she says on the page.”


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