At age 8, Skyla Tomlinson-Guckert became a carer for her mother, who had suffered a brain injury.
Te Rina Ruru-Pelasio’s life as a young carer began in 2007, at 16, when her brother lost his ability to walk or talk after a motorcycle accident.
She went on to co-found Camp Unity, a non-profit organisation that supports young carers, such as Skyla, who is now 14.
But at $22,000 per camp and with seven camps nationwide each year, Ruru-Pelasio said it was a “struggle” to find enough funding to make the “holistic healing” programme financially stable.
Each camp hosts 36 young Kiwis who help care for loved ones needing assistance with everyday living, and she said she was flooded with demand.
Skyla has attended Camp Unity camps at Rotorua’s Tui Ridge Park three times. She lives in Christchurch with her family, including her mother and father.
She said meeting other young carers at the camps was about having connections with people who “understand you for you, instead of looking at all the differences”.
“[People] always look at the person with the brain injury and [not] the people behind them,” she said.
“I’m not different, it’s not my fault and it’s not something to be ashamed of.”
Skyla’s mother had influenza in 2017 and was in a coma for nine days. A year later she was diagnosed with a hyperoxia brain injury, and Skyla became a carer.
She said being a young carer was difficult because her mother’s brain injury was “invisible” from the outside.
“If you look at her she’s completely perfect. [It] looks like nothing is wrong,” said Skyla.
She said young carers often felt “unseen” and, as a teenager, the extra responsibility could be difficult.
“When I was younger, I never used to understand what was going on. But now, as I’ve gotten older, it’s got tough [with the] extra responsibility.”
Ruru-Pelasio said she experienced the challenges of becoming a young carer when her brother suffered a traumatic brain injury.
“Although I was proud and happy to support [my] brother and whānau, the pressure became overwhelming and it was a struggle to manage studies and caring.”
She said caring for her brother “took a toll mentally” and she suffered from anxiety and depression.
“I had zero self-love and self-worth and a sense of being guilty [when] doing activities,” she said.
She never told her family about her internal struggles caring for her brother during her teenage years.
“I was a high-school dropout, struggling and using alcohol and drugs to cope.”
Ruru-Pelasio said she did not “cope very well” with her mental, emotional and spiritual health during this time.
“I felt really isolated and alone through our journey, even though I loved being able to look after my brother,” she said.
Ruru-Pelasio met her Camp Unity co-founder Char Rain on her journey to recovery.
“It wasn’t until back in 2015, [Char] worked with me and gave us the empowerment to share our stories.”
Ruru-Pelasio went to the University of Waikato and graduated with conjoint bachelor of laws and bachelor of social science degrees.
She said there was a “ripple” effect after sharing her story publicly on television in 2017, with many young people coming forward with their own stories.
“We founded Camp Unity and started hosting annual camps,” she said.
The first was in 2017 and by 2022 the organisation had grown to seven camps per year. Camps are three days long and all expenses are covered by the organisation, including accommodation, catering and activity costs.
Ruru-Pelasio said the camps were for anyone from the ages of 7-24 who may have a family member with a brain injury, disability, mental illness or who is struggling with addiction.
“We’re getting emails after emails and contacts from families who can see how this community can support their kids and how their kids are struggling.
“We can’t meet their needs until we get the funding to be able to do something about it,” she said.
Camps were aligned with weekly phone or Zoom call meetings to further support the carers..
“We just want to be able to give other young carers the opportunity to get that holistic healing, connect with others and … be seen, heard and understood.
“These kids are so empathetic and they are beautiful taking on a huge role with no support for them in New Zealand,” said Ruru-Pelasio.
She said Camp Unity was working with schools to educate others about the needs of young carers.
The next camp was scheduled to be held in the Bay of Plenty in November. Camps are open to any young carers and applications can be submitted online.
Michaela Pointon is an NZME reporter based in the Bay of Plenty and was formerly a feature writer.