Rotorua boy with cerebral palsy Shane White dies on Christmas night – New Zealand Herald

Wednesday, 20 January 2021 Rotorua Daily Post

15 Jan, 2021 04:00 PM5 minutes to read

Anne Donnell, with her grandson Shane (centre) and his brother Isaiah pictured in 2015. Photo / File

One "absolutely irreplaceable star" has left a Rotorua family broken after their young boy went to sleep on Christmas night and never woke.

However, the 12-year-old's family has found comfort in knowing he died happy after the "most beautiful day" where his infectious smile never left his face.

Shane White suffered from cerebral palsy - although "suffered" was not something Shane would let you believe, his nana Anne Donnell said.

Donnell raised Shane along with his brothers since he was a baby. She said through his countless surgeries there was always a beautiful smile that shone through.

It's one of the many things she will miss now he's gone.

"The whole presence of 'here I am' when you would walk into a room. It's just heartbreaking. I just miss him so much, he was so full and our lives were so full of him.

"There's just a big void here now."

Shane was non-verbal and in a wheelchair. As Donnell describes it, he did not fit into this world, but that didn't mean he didn't have a wicked sense of humour and intelligence to go with it.

"He was just my little star because he was so bright, he was the most intelligent little boy."

Shane's world was unlocked after he received his communication device which he could use to speak by clicking on the words, then spoken by a programmed voice.

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It was a weight off Donnell's shoulders when the day came, she said.

"It opened up Pandora's box for him and let everything out. Sometimes you want to tell your kids to be quiet, but I never wanted to tell Shane to be quiet because once he found his voice, it was just amazing.

"Finally, he could be the boy he wants to be. And he did."

Donnell's house was then filled with the sound of Queen Elizabeth speaking up and down the hallway - a sign of Shane's wicked humour.

Donnell recalls when her grandson went on an online shopping spree at Noel Leeming with the help of his device, getting everything his family needed such as fridges, washing machines, and speakers.

"He clocked up nearly $40,000, it was just lucky there wasn't a credit card lying around," she said through laughter.

Like most 12-year-old boys he loved his sport, including WWE wrestling, cricket and the All Blacks - so much so he cried when the Men in Black lost against Argentina.

"And even though he's a Rotorua boy, he loved the Hurricanes from Wellington. It was a lot to do with the colour because his colour was yellow."

Dana Watkins, Shane's special education teacher, told the Rotorua Daily Post Weekender she was always amazed, but never surprised by his brilliance.

"He was as much my teacher as I was his, maybe even more because he did teach me so much that he didn't even know he was teaching me.

"Even not to assume, when you meet someone like Shane, because you never know what is going on inside that brain. Give them time to show you who they are."

Watkins taught Shane while he was at school but while he was being home-schooled she came around every day to help out.

"He was the most amazing little boy with an incredible sense of humour and very clever even though he spent 10 years of his short life trapped in a body that couldn't speak."

She remembers having to guess what Shane needed prior to his life with the communication device, which meant she could only ask yes or no questions.

It wasn't until the device came along that Watkins realised Shane could read.

"I used to write those things out on the laptop, and I wouldn't say a word, and he would go on his device and answer me.

"I got goosebumps because I was so proud of how amazing he was. No one really had known, we all knew he was intelligent but we never knew how intelligent and a lot of people just brushed him off."

Through their time together, their bond grew and Watkins referenced Shane as her own nephew.

Shane would email her throughout the day with photos of things throughout the house or selfies - always titled to Aunty Dana.

"When I used to email Shane, I always put it 'to my nephew Shane' and I told him that he was my nephew whether he liked it or not because I loved him like he was my own family.

"He was my family, I don't care if he wasn't my blood, I loved him. You can't quantify, you know, I loved him and I will always love him."

Shane's death was something that Watkins never expected, regardless of his disabilities.

It had never occurred to Watkins that her "little mate wouldn't be here". It's part of the reason why she created a Givealittle page in his honour that would help raise funds for the family to grieve without financial pressure.

As his carers, Donnell and her son have now lost their income.

"I just wanted to do something so the family had time to grieve and go through that process without thinking 'I've got to go and find a job'.

"That's been their life for so long and they're still trying to get their heads around the fact that he is not here."

With Shane no longer here, Donnell was just trying to get through each day and appreciated the love of "Team Shane" that was getting her through.

"It's just a big profoundness. But it is a comfort to know he was a presence in every single room of this house, and everywhere I look I just see a picture of him smiling."

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Rotorua boy with cerebral palsy Shane White dies on Christmas night - New Zealand Herald