An Ashburton mother of two children living with rare disorders is calling for change for those battling unique conditions in a health system that offers limited support.
Alanna Peck and her husband Russell have four children: Charlotte, 16; Chloe, 13; Lachlan, 9; and Oliver, 7.
When Lachlan was born, his family knew something wasn’t quite right but got brushed off by doctors. Sixteen months later he was deaf.
It took medical specialists three and a half years to diagnose Lachlan with DiGeorge syndrome, or 22q11.2 deletion syndrome – a chromosomal disorder that results in poor development of several bodily systems. The disorder can cause heart defects, poor immune system function, and low levels of calcium in the blood.
Alanna told 1News it should have been picked up sooner given Lachlan had a "few classic signs" that were overlooked due to a "lack of understanding of rare disorders".
Lachlan needed hearing aids and started speech therapy. Doctors later discovered he had a sub-cleft palate and required surgery.
"There were lots of extra appointments with speech therapy school because he couldn’t talk, couldn’t hear," she said.
The family started learning sign language and Lachlan and his brother Oliver son started to develop their "own language". Eventually, another surgery saw Lachlan’s hearing return but there are still ongoing issues.
"He gets fatigued quite easily, his comprehension is really at a low standard, and he can read really well but he does not understand what he is reading," she explained.
"He plays miniball, they do StarJam, they do cubs so he doesn't want to miss out which is fantastic … Give him a hammer and a nail and he will build you anything."
'Just keep fighting'
Then in February 2021, Lachlan’s sister Chloe had a fall at school that "forever changed the path of our family".
"I thought Lachlan's condition and the health system was a battle. I had no idea what we were going to be up against now."
The now 13-year-old had developed chronic pain syndrome and spent weeks in the hospital as doctors struggled to get it under control.
"She was told by a paediatrician it was all in her head, she needed to get over it and get back to school.
"She'd started losing the ability to walk and then she was diagnosed with a functional neurological disorder."
In April of that year, Chloe lost all feeling from the waist down. Doctors believed the "pain had established" and she was going to need intense rehabilitation to get back to some kind of normality.
Just three months prior, Chloe had been representing Ashburton in running at the Colgate Games in Nelson, and now she was about to learn how to use a wheelchair.
Chloe spent four weeks at the Wilson Centre, a child rehabilitation service on Auckland's North Shore that provides "comprehensive, family-centred rehabilitation services" to children from 0-16 years old.
Alanna said when they got home to Ashburton, Chloe was allocated one hour of physio a fortnight.
"That’s all she was entitled to. ACC decided that they were going to decline her case and I knew that for any kind of future for Chloe, if Russell and I were not here, we needed to battle that."
The financial troubles hit hard when Alanna had to give up her job to take care of Chloe full-time. The family also had to remortgage and modify their home, as well as change their vehicles to accommodate their daughter's needs.
"She wasn’t going to school and then by that Christmas, we were like 'this is our life now – it's not going to change'."
Chloe started losing feeling in her arms in April 2022, and Alanna worried that if she couldn’t move in her wheelchair then "she would need constant care from us lifting her".
While searching online, Alanna came across the Advance Rehab Centre (ARC) in Sydney, which describes itself as a leading independent neurological rehab provider. The Pecks booked Chloe in at a cost of $45,000. For nine weeks she worked hard, doing three hours of physio five days a week. Chloe left walking on a frame.
The teenager returned to school this year when she came down with Covid-19 and the inflammation from the virus caused her pain to be horrific. She developed functional seizures which can last from two minutes to two hours, sometimes leaving her unable to walk or talk.
Her bout with coronavirus also sparked tics in the girl, which can make the family smile.
"You’ve gone from having this really quiet kid who wouldn’t say 'boo' or say the wrong thing in life and she’s calling everyone Karen. She was fascinated with fire alarms so I basically spent all the days in hospital making sure she couldn’t get to fire alarms," Alanna said.
While the future is uncertain for the Peck family, they take one day at a time and try to stay optimistic in the hope more help will come. They recently got accepted by ACC.
"There is a real lack of understanding of functional neurological disorders, really, in the world yet one in five hospital admissions for neurological symptoms is functional neurological disorder.
"I wouldn’t wish it on anybody ... The failure as a mum I’ve felt that my daughter's in so much pain I can’t help her, that sometimes she wants to die because if she dies then the pain stops.
"I told her the pain stops for her, but it will never stop for me."
The exact number of people living with a rare disorder in New Zealand is not known, but it’s estimated to be around 300,000.
Alanna is supportive of an online survey that’s being carried out by Rare Disorders New Zealand, so everyone can be counted and be factored into government decisions.
"Without the collective information then we cannot move forward … all I can say to people is 'don’t give up – just keep fighting'."
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