Hannah's VIVID Lights Wish
10-year-old Hannah, born with half a heart, lights up at her wish to visit VIVID Sydney
Bub's bumpy start
Meet Hannah
Hannah is the little girl born with half a heart. Yet she's also full of heart and courage, having overcome four open-heart surgeries in just 7 years.
Wish mum Emma first learned something was wrong with Hannah's heart during pregnancy. A pericardial effusion – which is excess fluid surrounding the heart – meant Emma's baby could be stillborn or born struggling to breathe.
Some 20 doctors were in the delivery room the day Hannah was born, and she was whisked off to The Royal Children's Hospital within hours.
"When she was about six or seven hours old, they drained the fluid out," Emma said.
"There was about 100ml of fluid – you can imagine a tiny baby, that's a lot of fluid putting pressure on the heart and lungs.
"They had to do it straight away; otherwise, she wouldn't have survived."
Background
Setbacks and surgeries
Hannah was diagnosed with hypoplastic left heart syndrome – which meant the left side of her heart literally didn’t form - and she required three open heart surgeries in her first year.
The first open-heart surgery at 36 hours of age went well, but there was a serious setback a couple of days later.
"After the operation, they leave the baby's chest open for a couple of days in case anything goes wrong, so they can quickly go in again. In the Intensive Care Unit, they went to sew it up. But something happened, and she went into cardiac arrest," Emma said.
“I don't know how long they worked on her, probably 10 to 15 minutes. She had to go back onto the bypass machine because her heart had done so much work. That was terrifying. It was probably one of the worst days of my life.”
As Hannah was in intensive care for her early weeks, her mum couldn't hold her.
"The first time we got to hold her, she was 18 or 19 days old. I got a photo (see right), and when I look at it now I just get goosebumps," Emma said.
"There were cords everywhere, and she was still on oxygen. It was an awkward first hold, but it was just the most amazing thing - it was well worth the wait."
After 155 days in hospital, Hannah finally came home. But her challenges weren't over, and as she grew, her parents noticed Hannah's development was slow.
In 2017, aged 5, Hannah was diagnosed with the rare Ayme-Gripp syndrome, which means she can't hear or speak, is vision-impaired and has an intellectual disability.
Girl with a curl
The Hurricane sweeping people away
Family and friends have affectionately named Hannah, 'Hurricane Hannah'.
"She's always on the go, never stops," Emma said.
"She's gorgeous; she's very happy and very cheeky. She's also strong-willed, it's her way or the highway."
Emma said Hannah was also smart, despite her learning difficulties.
"We teach her basic sign language, you show her a sign and repeat it, and she'll do it," Emma said.
"She has been strong since she was born. It's impossible not to be strong and brave to get through what she has."
Emma said Hannah is an "absolute firecracker" and her family wouldn't be the same without her. "Sometimes you get thrown a lot (in life), but seven years on she's kicking goals," she said.
"Everyone who meets her remembers her, that smile. She's a very determined little kid. People don't forget Hannah very quickly."
Wish day
A wish that brings light to the dark
Hannah's wish 'to see the lights of Vivid' came true in June 2022.
Vivid Sydney is the Asia-Pacific's leading multi-artform festival that transforms Sydney into a vibrant hub of creativity, innovation, and community connection through light installations, music, ideas, and food!
"She loves anything with lights," Emma said.
"Her school has a sensory room, and she loves that."
After flying Hannah and her family (mum, dad, and sister) to New South Wales, they headed off to Iron Cove Wharf, where Hannah's wish ignited with a private, VIVID experience, as special guests of Destination New South Wales.
Travelling in their own personal golf buggy, Hannah and the family also got to experience some of the incredible VIVID installations like:
- The Geysers (three dynamic lighting sculptures made entirely of recycled blue plastic bottles)
- The Macula (an immersive spiral tunnel that you can walk through)
- Eventuation (an open weave arc-like installation with sensors that pick up on visitors' conversations and activity and turns them into ripples of light and sound when approached), and many more!
“Just having a family holiday. It’s something we can look back on and say, ‘this is what we did’ and Make-A-Wish made it happen.”
The Wish Journey
How a wish comes to life
1. Wish Capture
1. Wish Capture
Depending on availability, either our Make-A-Wish volunteers or our Wish Catcher team will arrange to meet each child (either in-person or virtually) to capture their greatest wish idea, getting to the heart of what they truly want and why. This is part of what makes Make-A-Wish unique, giving children full creative control while exploring their wish idea.
2. Wish Design
2. Wish Design
Back at Make-A-Wish HQ, we collaborate with families and volunteers, with support of the medical teams, to create the ultimate wish experience for each child.
3. Wish Anticipation
3. Wish Anticipation
In the lead up to the wish, we take each child on an anticipation journey designed to build excitement, keep them engaged until their wish comes true, and provide a welcome distraction from medical treatment. Anticipation can be incredibly powerful, helping to calm, distract, and inspire kids at a time they need it most.
4. Wish Realisation
4. Wish Realisation
This is when the planning, preparation, and anticipation of the wish finally comes true. Children get to experience their greatest wish – it's everything they’ve imagined and more.
5. Wish Impact
5. Wish Impact
Wish impact studies show that a child's wish lives on, long after the moment. A wish gives more than just hope – with an incredible and lasting effect on the lives of wish kids, their families, and wider communities.
