Life with an ultra-rare disease is anything but predictable. Even before her second birthday, charismatic little Honey Goebel had already undergone two lumbar punctures to reduce the build-up of fluid in her brain.
Honey was born with CFC (short for cardiofaciocutaneous) Syndrome – a rare genetic condition that affects only around 200 to 400 people worldwide – which also causes issues with her heart.
“Honey sees a cardiologist and needs daily medication for her heart condition,” explains her dad, Jarek. “She’s a busy little bee as she also sees an ear, nose and throat specialist, a dietitian, physio, occupational therapist, a gastro team, geneticists, and respiratory and speech specialists. That’s on top of visiting a neurologist, paediatrician and her GP regularly.”
Honey’s complex health needs
CFC Syndrome can also cause dysphagia, meaning Honey has difficulty swallowing. As well, she has a floppy airway, which collapses when she breathes, causing her to gag and choke often. As she’s at risk of something other than air entering her airway (which can lead to dangerous health complications) and her stomach also doesn’t tolerate milk well, milk is fed directly into Honey’s intestines via a tube 23 hours a day every day.
“Hopefully, as she gets older, things will change,” shares Jarek. “But for now, this is our normal, and wherever Honey goes, her feeding bag goes. This creates many challenges, and we worry Honey will get caught up in her feeding tube while turning in her sleep. Even though we use a baby monitor and app, my wife Kimese hasn’t had a lot of sleep since Honey was born. Kimese also regularly experiences migraines and, when they come on, they’re so severe that she can’t care for Honey, which is terrifying for all of us.”
Finding help from Hannah’s House
Honey was more than a year old when Jarek and Kimese learnt about Hannah’s House and the in-home and in-community (as well as in-school) support the not-for-profit organisation provides to children with complex health needs, and their families. The Goebel family had some NDIS support at the time but had no funding for respite.
Understanding the Goebel’s deep need for support, Hannah’s House was able to cover the cost of sending support workers into their home to help care for Honey free of charge. This pro bono program is possible thanks to supporters such as Telethon, Mineral Resources and the Minderoo Foundation.
“The amazing support workers from Hannah’s House are really great with Honey and it lets Kimese breathe a little, which has been heaven sent,” reveals Jarek. “It also gives Kimese time to be with our other kids, focus on the house or leave home on her own to run errands or take herself to her own medical appointments. It’s so important for her, for Honey and for all of us.”
Preventing burnout through respite
“Burnout is a massive concern for parents who care round-the-clock for children with complex health conditions and who have to carry out medical procedures that would ordinarily be done by a nurse,” explains Hannah’s House CEO Jonine Collins.
“It’s essential they have a break to rest and recharge for their own wellbeing, for their other children and for their child with complex needs. If parents don’t get that respite, they can at times worry about their ability to safely care for their child. This can lead them to feel like they have no other option but to readmit them to hospital, which is unpleasant and places added pressure on the health system.”
With Hannah’s House providing information on the support Honey needs, Honey’s NDIS plan was reassessed. Funding has now been provided to cover the cost of a support worker for Honey 6 hours a day, 7 days a week.
Keeping up with pro bono demand
“We’re thrilled Honey and her family now have the respite support they always needed funded through the NDIS, but some aren’t so fortunate,” states Jonine. This can be due to the child’s condition, a lack of diagnosis or information, or that respite isn’t seen as necessary because the care is perceived to be normal parental responsibility.
“For those families, we’re a critical lifeline, paving the way to relieve the mental, emotional, physical and financial burden that comes with having a child with a disability. However, sometimes we simply don’t have enough funding to be able to provide this crucial safety net and having to turn families away is both heartbreaking – and deeply worrying.”