Heartache as young Adelaide brothers go into palliative care

There’s a heartbreaking reason this festive photo of three loving siblings is so special. Two of the children are in palliative care. Their brave mum shares their story.

A parent’s pain on learning a child has an incurable illness is unimaginable: to hear it twice, in relation to your only sons, surely too much to bear.

But for South Australia’s Lovett family it is a devastating reality that mum, Kiera Howell, and dad, Bobby, are bravely facing with both Connor, 8, and Declan, 6, now in palliative care.

The couple’s youngest son was diagnosed with the rare condition leukodystrophy first, in June 2018, genetic testing later confirming their eldest boy also had the disease.

Only little sister, Evie-Lee, 3, has escaped the condition that affects the central nervous system.

“It was heartbreaking to find out about one of them, but to then learn both boys had it, it just killed us,” Ms Howell, 29, said.

The family, originally from Port Lincoln where Bobby worked as a prawn fisherman, relocated to Adelaide after the boys’ diagnoses. They are now under the care of the Women’s and Children’s Hospital Palliative Care Service.

Ms Howell said despite the heartache, the family’s priority was ensuring the boys were happy.

“Yes, we have hard days but if we give up, we are just letting our kids down, so we just fight on and continue to push through,” she said.

“For us as parents, it is just hearing the boys giggle and laugh … knowing they are happy and making memories together is all that matters to us.”

Both boys are on a rigorous pain management plan and regularly receive Botox injections to help treat spasticity, a symptom of the illness, but Declan’s illness is more advanced – he can no longer walk and is fed through a tube.

“We don’t look at the bigger picture in terms of how much longer we have left with the boys … I can’t even look at what the next six months will bring for us, obviously it will be harder when the boys are gone,” the heartbroken mum, breaking down in tears, said.

“But, at the end of the day, we hug and kiss them good night and say ‘I love you’ … life isn’t something to be taken for granted, tomorrow is never promised to anyone.

“I get my strength from the boys … there are other people out there going through something more severe than us, so we do count our blessings.”

Capturing a special moment: Kiera and Bobby with their beloved boys and little girl, Connor, Evie-Lee and Declan. Picture: Sam Wundke

Ms Howell said the support the family received from the palliative care team, who help with everything from pain management to getting the boys to appointments, was invaluable.

“We don’t ever look at them as specialists but as our family, they are going to be right beside us until the boys go, we have that bond with them you get when you are on a journey like this,” she said.

Sara Fleming, WCHN paediatric palliative care clinical service director, said her team was focused on helping families and children “live the best life they can, for as long as they can”.

“It is always an overwhelmingly humbling experience to watch families rise to this challenge, to watch parents learning what they have to learn and loving in they way they have to … (to see) what they sacrifice and what they value,” she said.

“I have worked in this field for 22 years and it is hard to nail down (what it means to me) … I have a great sense of what really doesn’t matter, and what really does.”

To support the WCH Foundation Christmas appeal, go to wchfoundation.org.au/christmas.