Jayden Hunter and Levi Wright have spent a large portion of their lives at the Royal Children’s Hospital.
Now the good friends want to give a little back.
Jayden, 14, was a patient at the hospital before he was even born after being diagnosed with scoliosis.
When he started having seizures at six days old, testing showed more problems.
Nine-year-old Levi has been a patient for eight years.
He was recently diagnosed with a rare genetic condition called Coffin-Siris Syndrome. Only 200 cases have been detected worldwide.
The boys’ mothers Brooke Munn and Katie Wright have become friends after bonding over their experiences.
“Both boys use wheelchairs part-time and were going through the genetic testing – Jayden is still undiagnosed,” Ms Munn said.
“We realised how alike our boys were and it is nice to have someone understand what we’re going through.”
Ms Wright described going through genetic testing and not getting answers as a brutal and gruelling process, which had a huge emotional, mental and financial impact.
“You just don’t go in for a blood test and get the results the next day,” she said.
“The exome sequencing for us took over two and a half years and included our samples going overseas, waiting for months and months with no word on anything and just hoping for a diagnosis.
“That’s something people don’t understand, that you’re in limbo every day.”
The mothers estimate the boys between them have seen 25 different specialist clinics, had MRI scans, CT scans, surgeries, blood tests, inpatient admissions and time in intensive care.
Ms Munn said her son Jayden’s life had been saved numerous times by the hospital.
“If it wasn’t for them we wouldn’t have him here with us today, both in emergency situations and with operations that he has needed,” she said.
“We’ve met so many families in similar situations to us. It’s a really fantastic place – they’re really inclusive of everyone, really welcoming and helpful.”
The families are putting on a fundraiser to give back to the Royal Children’s Hospital with money raised going towards sponsoring a bed.
“We know financially we would never, ever be able to afford all of the treatment our boys have had combined,” Ms Wright said.
“It would be in the hundreds of thousands of dollars, so $5000 a year to sponsor a bed is not a lot. It will be exciting for the boys to see their names on the honour board.”
Held at the Ballarat and District Trotting Club, the fundraiser includes special guests former footballers Doug Hawkins and Cameron Mooney and comedian Tom Siegert.
The event takes place on Wednesday from 6-10pm. For more information contact 5335 9041 or make a donation at rchf-fundraising.everydayhero.com/au/katie