Tadhg Giles used to be a positive, energetic 10-year-old before he was struck down with a rare disorder.
The Christchurch boy loved playing sports, singing, dancing, and leading the school’s kapa haka group. He was intelligent and had a natural flare for maths, where he showed off his skills on a YouTube channel called Tadhg the Math Genius.
Last year his life changed when he caught viral encephalitis from influenza A. His brain had swelled, a 70-minute seizure then followed and he was rushed to Christchurch’s intensive care unit where he was put on a ventilator.
The family relocated to Auckland, where they were told the Wilson Centre, a rehabilitation service for children, would be able to help.
Tadhg’s father Greg Giles said initially they were told that after two months at the centre, there would be a review and then possibly another two months of treatment. But then he was called to a meeting after just three weeks.
“I got sat down with the doctor, and I thought it was a meeting about medication because they were adjusting his medication at the time, and the doctor said it wasn't a right fit for Tadhg, the rehab he wasn’t cognitive enough for rehab, and Tadhg wasn’t the right fit,” said Greg.
The family refused to leave and said there was nowhere for him to go.
Tadhg’s mother Laura said that her son needs round-the-clock care, but because he’s not acute, hospitals are not an option.
She said he was also not eligible for ACC funding, because what he had wasn’t an “accident”.
“In New Zealand, there doesn’t appear to be the type of rehab, more cognitive rehab that Tadhg needs.
“We can’t send him back to the hospital, he’s not acute in the first instance and also trying to contain him in a hospital room is going to require a necessary amount of sedation.”
The last time Tadhg went to the hospital it was “hell”.
“He was screaming, hitting, continuously going around in circles, pulling everything off the walls, he was hurting us, he was hurting himself,” said Laura.
Te Whatu Ora’s Canterbury Chief of Child Health Dr Clare Doocey said she had great sympathy for Tadhg and his family and appreciated the immense strain they are under.
“This has had a profound impact on their lives and we understand their desire for certainty during such a distressing time," Doocey said.
“Child-centred care is our goal at all times and different options are explored with families when planning for their child’s specific healthcare needs. A patient’s journey with a neurological injury can be unpredictable and complex, and the care and support required is unique to each child. Because of this complexity, it can take time to plan for the right environment or support required to provide a safe, clinically appropriate, level of care.
“We are committed to working closely with the family, our Auckland colleagues and Whaikaha to support the whānau with their transition back to Christchurch."
Whaikaha, the Ministry of Disabled People, is also now involved after 1News made inquiries.
Spokesperson Amanda Bleckmann said the local Needs Assessment Services Coordination, Lifelinks, will work with Tadhg and the family.
She said an assessment will be done to ensure Tadhg receives disability support, including home modifications.
Laura Devine-Giles said she wants 24/7 support for Tadhg and she doesn’t hold out much hope given the trouble they’ve had so far.
She said she would not leave the Wilson Centre until they get what they want from the Government agencies.
A fundraising page has been set up for the family.
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