It was a moment of pure magic. Jenn Hooper had hoped her profoundly disabled daughter Charley would respond to being serenaded by operatic trio Sol3 Mio, but nothing had prepared her for what a tender and touching encounter it would be.
Charley, who suffered severe brain damage when she was born, can’t see, speak or move. Her family don’t know if she even understands who they are. But she can hear and she can feel, and she seemed to love it when brothers Pene and Amitai Pati, and their cousin Moses Mackay, not only sang to her in a Hamilton street, but kissed her and held her hand.
Earlier, when the Hooper family joined the singers in a café as a special treat for Charley, Moses asked if he could hold the 10-year-old, and gently cradled her in his arms. Jenn and her husband Mark were deeply moved.
“Nobody ever asks to hold Charley,” says Jenn. “But the boys were just so lovely.
“When Moses held her, she was so relaxed she almost fell asleep. She wouldn’t have done that if she wasn’t comfortable. For them to treat her the way they did, and to spend two whole hours with us, was just amazing. It wasn’t a PR stunt – it was genuine tenderness.
“I’m not the sort of person who cries easily, but I was in tears by the end of it.”
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Being serenaded by Sol3 Mio was a dream come true for Charley.
Jenn (45), Mark (45) and Charley, along with Charley’s brothers Zak (9) and Cody (1) got to spend time with the top-selling trio after Sol3 Mio heard that being serenaded by them was one of the items on Charley’s bucket list.
Jenn and Mark started the list of things for their daughter to experience when she was five. The reason for it, admits Jenn, was initially rather morbid.
“We knew we could lose her at any time – children like Charley often don’t live past the age of five – and we wondered what we could say at her funeral about her life. The bucket list gives her chances to experience an extraordinary life, rather than just lying in bed looking at a ceiling she can’t even see.
“But over the years, it has morphed into something a lot more positive. It’s our way of trying to give her the best life we can and if that means involving her in lots of crazy adventures, we will.”
The list includes typical things that Kiwi kids do, like going on a water slide or sleeping under the stars, as well as extra-special treats such as having the haka performed for her by the All Blacks or “dancing” with TV host Ellen DeGeneres on her show.
Some of the items she has already been able to tick off include riding in a racing car, going on a helicopter flight, holding a snake, being an extra on Shortland Street and taking the ball out at a Silver Ferns game.
Being serenaded by Sol3 Mio was added after Charley had an astonishing reaction to hearing them on TV, singing the national anthem at a rugby game.
“Charley had been quite grumpy but when she heard Sol3 Mio, she went quiet and became smiley, which was very unusual,” tells Jenn. “She seemed mesmerised and when we played the footage back to her, she did exactly the same thing. After that, she spent many happy hours listening to Sol3 Mio.”
Moses had a special bond with the young girl.
Jenn says having the bucket list motivates them to give Charley as many different experiences as they can. And because the whole family is often able to take part, they’ve created some happy family memories for Charley’s brothers.
“I’ve never wanted them to feel like they have missed out on things because of their sister. But this way the boys get to do cool things because of her, and it gets us all out and lets us have fun, which we really need because our life is pretty serious most of the time. The boys will have these lovely memories to hold on to when she isn’t here.”
The bucket list is also a way of raising awareness and showing people that profoundly disabled kids like Charley do exist – many never go out in public – and they can sometimes partake in activities like everyone else, although making them happen can be a challenge.
“We can see that Charley really opens the eyes of people who are involved in helping to organise these experiences. How often do you see severely disabled people doing fun things? Why shouldn’t they get the chance like everyone else?”
Charley’s brother Zak enjoys making memories with his sister.
Jenn and Mark are trying to find positives among the heartache they’ve been through.
“It is very hard having a profoundly disabled child who isn’t going to get any better and who could die at any moment. I want her to have the most amazing life we can give her. Why should she have to settle for anything less? Every parent wants the best for their child and that’s really all we want for Charley.”
Charley’s bucket list
• Go down a water slide
• Swim with dolphins
• Meet Guns N’ Roses/Mel B/Elton John/Paul Henry/Judge Judy
• Be a covergirl
• Ride in the sidecar of
a Harley Davidson
• Be a flower girl
• Ride in the “teacups” at Disneyland
• Become Cinderella
• Have high tea at the White House
• Have FUN!
• Dance with Ellen
• Sleep under the stars
• Be given a haka by the All Blacks
• Take the ball out in a Silver Ferns game
• Help invent something
• Have lunch at the Beehive
• Go ‘planking’ on the pane of glass in the floor up the Sky Tower
• Do a SkyCity sky jump
• Fly First Class
• Go to London to visit the Queen
• Be an extra in a movie
• Ride on an elephant
• Get “married”
• Get kissed by a prince (yes, a real one!)
• Stay the night in a castle
• Be significant
Words: Donna Fleming
Watch: Sol3 Mio’s romantic proposal
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