“One of the only reasons we could come home from hospital was because we had pro bono support from Hannah’s House,” explains Perth mum-of-three, Madison Malpass.

When Madi’s youngest child, Marlin, arrived into the world in 2023, he needed an unexpected level of medical care.

Marlin, now 3, spent the first few months of life at Fiona Stanley Hospital and then Perth Children’s Hospital (PCH).

He was clearly struggling, but the cause was a mystery.

“Everybody knew something was wrong, but nobody really knew what, and all the usual newborn stage tests came back OK,” reveals Madi.

Not long after Marlin was initially discharged from hospital, he contracted his first respiratory illness.

“After that, we couldn’t really stay out of hospital,” recalls Madi.

Marlin’s mystery solved

A second round of genetic testing would eventually uncover that Marlin has ATR-X Syndrome – also called alpha-thalassemia X-linked intellectual disability syndrome.

A rare inherited disorder that almost exclusively occurs in males, it impacts many parts of the body and requires nearly the entire spectrum of specialist care.

“We’re not sure if Marlin will be able to walk and talk. We’re doing a lot of things to help support him … and we do hope he can,” says Madi.

“He also has dyskinetic cerebral palsy, epilepsy, dystonia, hypotonia, a lot of GI issues, feeding difficulties, and he sleeps with a ventilator and requires a lot of oxygen throughout the days as well.”

He also has cerebral visual impairment and is tube fed.

With only about 200 people globally impacted by ATR-X Syndrome, the journey is incredibly overwhelming.

“The medical team has been upfront. They haven’t worked with any kids like Marlin, so they’re not sure what will or won’t work,” Madi says.

“Advocating for your child when you don’t have all the information can be very difficult and when you do have to advocate is generally when they’re not well or you are thinking about the palliative side of things.”

Impact on the whole family

The family journey is also isolating.

“Our life is completely different,” Madi states.

“It revolves arounds medical appointments, medications, planning, physio, OT, speech therapy – things I wouldn’t in my wildest dreams ever thought I would have to do as a parent or would I ever think of doing for my other children.

“I considered going back to work, but Marlin’s schedule consumes my life.”

With Marlin’s dad, Toby, a fly-in, fly-out worker, juggling three kids and Marlin’s minimum five medical appointments a week is an immense challenge for Madi.

“It holds up what Arlo and Bohdi can do and their experiences,” shares Madi.

“There were two years there where they couldn’t do recreational activities because we couldn’t maintain all of it.

“We all speak to a psychologist because the mental and physical load of what we do every day is not normal.”

Life-changing support from Hannah’s House

The family was first introduced to Hannah’s House by Marlin’s PCH medical team.

“Before we were even allowed to go home, we had to have support in place. We weren’t on the NDIS then; we didn’t even know what it was,” discloses Madi.

Hannah’s House sent support workers into the house free of charge to care for Marlin and provide the respite Toby and Madi needed so badly.

“Marlin had no overnight or day care until Hannah’s House came in.

“My partner and I didn’t sleep. I was ready to pull my hair out and even now, if we didn’t have any of the supports we have, we would crumble.

“Respite for parents with kids with complex medical needs or disability is essential.

“The majority of people that aren’t in the same situation would assume it’s a luxury.

“But these kids can’t be left alone for a second and when you’re a parent to a kid with complex needs; you’re a doctor now, and a nurse.”

Looking Ahead

While the future for Marlin – who has already had more than 25 admissions to hospital, including some stays lasting more than three months – remains uncertain, the family is optimistic.

“We don’t know if he’s ever going to say ‘mum’ or ‘dad’,” admits Madi.

“But from what we’ve seen, he’s made milestones. We didn’t even know if he’d be able to stand up in his walking frame but now, he hobbles around.

“We’re over the moon on where he is.

“I’m blessed to be able to watch Marlin grow. He fulfills my soul.”