Five-year-old Brisbane boy Ricky MaCrae experiences so many seizures a day, his parents always have overnight bags packed and ready for emergency dashes to hospital.
Ricky has a rare developmental condition called CDKL5 disorder, diagnosed when he was just a few months old.
The “confronting” moment his parents, Tristan and Caitlin MaCrae, learned that the CDKL5 gene had not properly formed in the brain of their youngest son, was life changing.
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The disorder meant Ricky, who was “born an ordinary baby,” would regress and developmentally remain “like a newborn baby, practically,” Tristan told 7NEWS.com.au.
The MaCraes’ journey began when they noticed something “wasn’t quite right with (Ricky)“ eight weeks after he was born.
“We took him to hospital and pretty quickly realised something was up when he had a whole bunch of doctors and nurses run in,” Tristan said. “We came to understand he was having seizures.”
At just eight weeks old, Ricky was enduring a minimum of 10 seizures a day.
He was quickly put on medication to help stop them, and countless tests were sent off, including a lumbar puncture DNA test sent to Germany.
“That came back eight weeks later with his condition,” Tristan said. “CDKL5.”
But now, aged five and on a total of eight different medications, Ricky still has up to 15 seizures a day — the most severe of which can last up to 15 minutes.
“Some of the seizures he cries through, but Ricky is non-verbal, so he can’t communicate with us,” Tristan said.
‘There was no talk about the cost’
Ricky’s condition is also characterised by developmental delays and severe intellectual disability. He is tube fed, needs to use a wheelchair, cannot perform any tasks on his own, and has little control over his body movements.
Ricky is well known by the neurology, respiratory, paediatrics, ophthalmology, ENT and palliative care teams at Queensland Children’s Hospital, which has supported the family through countless stretches of time there.
Tests, treatments, and brain monitoring right from the get-go, alongside mounting hospital stays for seizure control and surgeries throughout Ricky’s life, have stacked up to what would be an inconceivable cost for most families.
Pre-made meals to be eaten at any time, subsidies for car parking, and a play space their eldest son Hayden could enjoy during visits were also offered.
But the costs were always footed by the hospital.
“I can’t imagine they were cheap, but there was no talk about the cost of anything,” Caitlin said.
“It’s one of those things that you just don’t think of, but it’s so great to have the Foundation there to think about it for you. It’s just one less thing to think about,” Tristan added.
“Sometimes we forget something and the hospital has always got it for us, whether that nappies, baby wipes, medications, syringes, everything which Ricky needs.”
Marathon advocacy efforts
Tristan and Caitlin said that in some ways, the reality of Ricky’s condition continues to be confronting. But the inspiration they pull from Ricky’s resilience helps them to find strength.
“It’s one of those things where you sort of grieve for what he’s lost in life, but also, you’ve gotta be strong for him,” Tristan said.
“We sort of just picked ourselves up and did what any other parent would do — be there for him, do everything we can for him, and advocate for him.”
That’s what Tristan and Caitlin are doing now, by running an 84km double marathon this month of August to help give back to the Foundation, and ensure that other sick kids and their families can receive the same level of care.
The 42k Your Way is a virtual marathon fundraising challenge which can be walked, run or rolled, across the month of August to raise funds for the Children’s Hospital Foundation and sick Queensland kids.
“Our goal is to raise as much awareness and funds for the Children’s Hospital and tell people the kind of great work that goes on there, behind the scenes,” Tristan said.
“We’re not athlete runners — 5km is hard for me. But the last kilometre when I’m struggling, I sit there and think about what Ricky goes through, and how he fights each and every day to be with us.
“I get myself up and go, you know what? If he can fight, I can fight for him, and for this Foundation. That’s what gets me through it.”
Now 58km into their 84km goal, Tristan said: “We’re over halfway through, so I think we’re going to smash it pretty quickly.”
“The last kilometre, we want to do with Ricky, in his specialised pram.”
“So hopefully, we can finish it as a family.”
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