A Kilkee mother living in New Zealand whose ten-year-old son is severely cognitively impaired following a flu infection, has appealed to the community in County Clare for financial help to bring him home from rehab.
Laura Devine-Giles’ ten-year-old son, Tadhg has inflammation in his brain, a condition known as encephalitis following an influenza A infection late last September. At the time, he was rushed to ICU and then the children’s ward at Christchurch Hospital before being transferred to Auckland in November.
Prior to becoming ill, Tadhg was a very chatty boy who loved playing rugby, singing in a choir and doing all the normal activities a child does in New Zealand. He was also the captain of his school’s kapa haka team. An intelligent boy, he is a self-described “maths genius” and even has his own YouTube channel.
Today, Tadhg no longer speaks and is cognitively impaired. The brain injury he suffered has left him with memory loss, psychosis, catatonic episodes and altered mental status. As well as personality changes, he requires assistance with daily living including toileting and eating. And with no safety awareness, he can often hurt himself and others.
The family are at a crossroads in terms of getting the right medical support and will have to move back home to Christchurch as the child’s period in rehabilitation care has come to an end. They are required to self-fund extensive modifications to their home with no guarantee they will get funding. So preparations are now underway to modify the family home to make it a safe environment for the young boy to live in.
Speaking to The Clare Champion, his mother Laura said, “He has no understanding at all of his 10th birthday which was on Christmas Eve nor any understanding of Santa or presents. He doesn’t understand any language or communication and is now non-verbal.
“He had a 70-minute seizure and was on a ventilator. After some initial early recovery, we were told Wilson’s rehabilitation in Auckland were in a position to help, so we moved cities and left our support network behind.”
Laura is originally from Kilkee. She moved to New Zealand in 2009 after she met her husband, New Zealander, Greg Giles in Ireland. The couple live in Christchurch in the south island of the country and are also parents to two-year-old Teagan. Laura’s mother Pearl Skehan is Kilkee born, and her three siblings live in West Clare and county Limerick. The family last visited Kilkee in May 2022. “Tadhg has been home twice and absolutely loves Ireland,” Laura says.
The dilemma for the Devine-Giles family is there is a gap in care and support for families in their position in New Zealand. It is agreed that a hospital environment would not be conducive to Tadhg’s recovery, and would require an unacceptable level of continued sedation. An interim move to a psychiatric facility had being proposed however, Laura feels strongly this would not be a conducive environment to his recovery.
The family is currently located at Wilson which is a rehabilitation centre at Takapuna in Auckland. The Wilson Centre provides intensive rehabilitation services for children from 0-16 years of age, including those with acquired neurological injuries who can participate in a rehabilitation programme. Wilson maintains that children with acquired brain injuries should go on to be supported by their local hospital and disability support services nationally. And now, they want them out. Both Laura and Greg feel their son is being pushed out of rehab and hospital facilities, and left with nowhere to go.
“The priority is to bring Tadhg home to a safe and sustainable living environment for him and Teagan. But this is dependent on two things. One, is appropriate support being put in place because Tadhg who needs ongoing 2:1 care; and the second thing is appropriate modifications to our house to make it safe for Tadhg and Teagan. We are not getting adequate support on either,” Laura says.
Since Tadhg’s brain injury, the two formerly close siblings are living separately and have barely been in the same room together because it’s no longer safe.
“And the family say the support offered through Disability Support Services (via their Christchurch provider) has been wholly inadequate, and Canterbury District Health Board (CDHB) have offered them nothing.
“We are in a Catch-22 situation with modification funding; funding applications are supposed to be made in advance, we can’t safely bring Tadhg home until we have made appropriate modifications to our house, but we are being told they can’t even begin the funding application until he is back in Christchurch with a suitable care plan in place. So we are being required to self-fund extensive modifications to your home, with no guarantee that you will get funding for them.
“We are fighting for the best for Tadhg, and desperately want to bring him home to Christchurch, but just need the support to do so.
“We need the CDHB and Disability Support Services to work together to get us the support we need,” Laura explains.
The IRFU have donated an Irish rugby jersey signed by the rugby world cup 2023 squad to be used as a fundraiser to help raise money for Tadhg Giles and his family. And Munster Rugby have also donated a signed jersey. All proceeds of the signed jerseys will go towards the family. The IRFU jersey is listed online for auction on www.trademe.co.nz. A fundraising drive is also being organised by friends in New Zealand on behalf of the family.
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Sharon Dolan D'Arcy
Sharon Dolan D'Arcy is originally from Ennis. Her work as a print journalist has appeared in a number of regional publications. She worked as court reporter at The Sligo Weekender newspaper and is a former editor of The Athenry News and Views. She covers West Clare news.