Hannah’s House helping provide care for little Honey, who has an ultra-rare disease, and respite for family

Many children like to carry something around with them — a beloved blankie, a favourite toy or an ever-present pacifier.

For Honey Goebel, her constant companion is a bag. But it doesn’t offer comfort; instead it harbours a pump that helps keeps her alive.

The now two-year-old was born with cardiofaciocutaneous (CFC) syndrome — a rare genetic disease that affects around 400 people worldwide — causing fluid on the brain, heart defects, difficulty swallowing, airway collapse, and developmental delay.

The rare disease has meant Honey has already undergone two lumbar punctures to reduce the fluid in her brain and has just been scheduled for another surgery.

A feeding pump, about the same size as Honey, is also attached to her 23 hours a day, feeding milk directly into her intestines via a tube.

The lifesaving device comes at a cost, with her parents Kimese and Jarek having to make sure she doesn’t get tangled in her tubes, even while she is sleeping.

“Life has been pretty rough for her,” Kimese says.

“At the moment, she’s having low blood sugars every time her feed stops, so it drops into a dangerous level, which means she has to be on her feeding pump 23 hours a day.

“It’s limiting how we live our life because we have to carry this bag around with us everywhere.

“She’s starting to get around a little bit so the pump is limiting how far she can move before it tugs on her — she has to have someone hovering over her to make sure she doesn’t get tangled in her own tube.”

The 24/7 monitoring at home, on top of having to drive to constant appointments with 10 specialists at Perth Children’s Hospital as well as other health workers in the community left Kimese, a mum to eight, close to “breaking point”.

In-home support from Telethon beneficiary Hannah’s House has allowed Kimese and Jarek to focus on being a mum and dad to Honey, rather than just her full-time carers.

The WA not-for-profit, which offers in-home and in-community care to children with life-limiting and complex health conditions, covered the cost of sending support workers into the Goebels’ home while the family were awaiting National Disability Insurance Scheme funding for respite care. This was all thanks to a pro bono program supported by Telethon.

“I was burning out, not eating very well, wasn’t sleeping at all, and advocating until I was blue in the face because I was just constantly worried about all these issues that we don’t know about with Honey,” Kimese says.

“I couldn’t even imagine that there was an organisation out there like this that could help families like ours.

“Hannah’s House have been a lifesaver for us, because I’ve got five other kids in school, and I’ve got to take them to their sports, and I’ve still got to function and cook and clean.”

Honey has also attended the Hannah’s House Playtime Program, where children with complex needs can simply enjoy being kids.

The future is unknown for Honey since her disease is so rare but Kimese is optimistic about her progress.

“The cells in her body don’t work like ours so there’s no standard, linear progression, so it’s hard to tell,” Kimese says.

“I feel like she’s almost thriving, in a way, now that we’ve got some support workers coming on board.

“Hopefully, it’s just upwards from here as she gets older.”

Honey is now taking her first steps with the help of a walker and is learning how to speak to her family using sign language.

Hannah’s House chief executive Jonine Collins says the organisation has been receiving Telethon grants for 10 years, which in turn enables them to offer much-needed support to parents and families.

“Respite care is absolutely critical for parents and carers who look after children with complex health needs 24/7 because burnout is a massive issue with many potential knock-on effects,” Ms Collins says.

“If they don’t get a break, it can drastically impact their ability to safely care for their unwell child, and their other children, spark severe stress, and take a significant toll on their own health.

“We are so grateful that, thanks to Telethon, our free respite care can offer a safety net to many families, like Honey’s, significantly reducing the strain on them and easing the pressure on WA’s hospital system.

“Without the support of Telethon and the community, we worry that families who really need our help may slip through the cracks.”