Brand new heart is music to Jazziah's ears
To mark Make-A-Wish Australia's 35th Birthday, we bring you Jazziah's story. A story about a brave, ever-smiling boy and his journey to getting a new heart.
The waiting list
Sleepless nights for parents
It was the phone call wish parents Angela and Lucas desperately wanted, yet genuinely feared.
The call would mean their then 13-year-old son Jazziah had 15 minutes to jump in the car and leave their Newcastle home to fly to Melbourne and receive his new heart.
Angela knew the phone call was coming. She tossed and turned most nights after Jazziah – known as Jazz– was placed on the transplant waiting list.
There were days she couldn’t get up, when she felt the waiting was just too much. But most days she prepared emotionally for the call to come.
Incredibly for Angela and her family, it wasn’t the first time. Angela had been the one to answer ‘the call’ a few years earlier when Jazz’s older sister Luka-Angel was told there was a new heart waiting for her.
Sadly, Jazz’s heart condition runs in the family.
Phone call comes
Emotions rise to the surface
When Angela’s phone rang with no caller ID one morning earlier this year, her husband Lucas happened to be walking past.
“I looked at him – and because we find those phone calls really scary – he said to me ‘it wouldn’t be that call’ and I said ‘but it could be’” Angela said.
“And so I answered it, and he saw my face, and instantly tears were falling down my face. He was feeling a lot of panic, saying ‘no, no, we are not ready’ – which is what I did for my daughter’s call, and that’s why I wanted to be ready every day.”
Trip to Melbourne
School mates say goodbye
Before they could leave home and rush to Sydney Airport, there was much Angela and Lucas had to do.
First, they had to locate three of their four children who would make the trip to Melbourne: 19-year-old Elijah, 17-year-old Luka-Angel and, of course, Jazz, aged 13. Jazz’s younger brother Jai would stay close to home with his grandparents.
Elijah was at a skate park but didn’t answer his phone, so Lucas took off in his van to find him.
Luka-Angel and Jazz were at school, so Angela rang ahead to say they had to leave immediately. She asked the principal to tell Jazz with a couple of mates present, for support.
After sharing the incredible news, Jazz’s principal thought it would be good for him to go say goodbye to his class.
“So they went down and made the announcement,” Angela said.
“And everyone started cheering and clapping. Jazz walked away from the class, and they were literally hanging out windows waving and saying ‘bye Jazz’.
“It was a beautiful send-off. You know, it was a really hopeful exit … the beauty of children, right?”
Race to catch plane
With the family together in the van some 15 minutes later, Lucas started the ignition and headed for Sydney.
Before she got in, Angela had the composure to choose a special shirt from her wardrobe. It read “Get Your Brave On” in large letters.
“I wanted Jazz to see “Get Your Brave On’’ without me even saying anything,” she said.
However Jazz, sitting in the back seat next to Luka-Angel, was already being brave, drawing on his faith to get him through.
“I was good on the outside, but I was kind of having a mini heart attack inside,” he said.
“I was at peace with it because I felt like God had me.”
Despite Lucas’s best efforts, halfway to Sydney, the family realised they would not make the airport in time for their flight. Calls to secure a police escort then a private jet, failed. But they were able to board another commercial plane shortly after.
“It felt scary, because we thought we would land (too late), when the organ was no longer viable,” Angela said.
“Because we know what can happen. It’s very short; it’s about four hours.
“But we were pretty blessed they could get us on, because there were so few flights to Melbourne that day – they got us there in time.”
Jazz and Luka need transplants
Jazz and sister Luka-Angel were diagnosed on the same day as children with the rare genetic heart condition, restrictive cardiomyopathy. It was December 2009: Jazz was 3, Luka-Angel was 6. The condition means with time, the ventricles of their hearts wouldn’t get enough blood to continue pumping properly. They would both need heart transplants to continue living.
“It was a horrific day. Lucas and I were both so crushed by it,” Angela said. “At the same time, we thought we had two cheerful, gorgeous little people. In front of them, we would put on such a brave face, and we wouldn’t tell people. We just wanted them to be treated normally. We just wanted them to be Luka and Jazz.”
Some years later, Luka-Angel had her heart transplant. There were complications, and what was supposed to be an eight-hour operation, went twice as long. She was hooked up to life support but eventually pulled through.
Jazz was first offered a heart transplant a few years ago; however, the timing wasn’t right. But every year since has got harder for Jazz to do the things his friends can easily do.
“I had to miss out on PE at school, I couldn’t ride bikes properly and getting upstairs was difficult,” Jazz said.
“I have wanted to get it (the transplant) for a few years, and mum and dad have been kinda hesitant because of Luka’s situation. I waited for a while then mum and dad were like ‘yeah we probably need to get it now’.”
Birth of Panorama Drive
Not being able to play sport because of his heart condition, Jazz threw himself into music.
He’s from a musical family, with his mum and dad first bonding as teens themselves over a guitar Angela had at the time.
“We never pushed the kids (into music), but there’s always been instruments they can pick up at home,” Angela said.
Jazz started playing an old guitar at home, and although he had tips from his family, he was mostly self-taught.
“It just became a beautiful outlet for him,” Angela said. “Music is something he can express himself through.”
Jazz formed a band with his younger brother Jai and two of his long-time mates. The group is called ‘Panorama Drive’, named after the street of Jazz’s first house.
Jazz’s musical talent was first revealed to his friends at school one lunchtime when he was invited by a teacher to pick up a guitar.
“And before he knew it, someone had pulled up some drums, then there’s some people singing, and it ended up a bit of a crowd, and he was playing the guitar just feeling really good,” Angela said.
“He just felt like this was a great moment; he was so excited to be part of it.”
His musical-themed wish is for a guitar pack to continue his passion for music, and to help him and his band.
The ultimate guitar pack of Jazz’s dreams includes an original Fender American 1960’s Telecaster electric guitar, a Cole Clark Angel Series acoustic guitar, an amp, a series of special effect pedals and a touring case.
'Goodnight my courageous heart'
Angela remembers some of her last words to Jazz before he was wheeled into theatre to receive his new heart.
They are words she says to him every night.
“Every night I do a devotion, I put my ear to his chest and say ‘goodnight my beautiful, courageous heart’, and I said that for the last time before his surgery,” she said.
“Then I just said to him ‘you’re so brave’.”
With only one person able to accompany Jazz into the theatre, dad Lucas was by his side.
He told his son a series of positive things too: that he’ll be able to run and join a sports team when the operation was over. He then asked him ‘what team do you want to join’ and at that point Jazz drifted off.
Jazz woke up in ICU with his new heart and a tube down his throat. The transplant had been successful.
Even though he was heavily sedated, he was doing hand movements, so Angela and Lucas asked him if he wanted to write.
Lucas held the paper as Jazz scribbled some words. The first sentence was ‘how long have I been here?’, followed by ‘does my scar look cool?’.
“And the next thing he wrote, when he was clearly still uncomfortable, was ‘pray’,” Angela said.
“He doesn’t remember it, but we still have this beautiful big piece of paper with messy writing. He wanted us to pray. And that spoke to what we see in him.”
Fast forward a few months and Jazz has made good steps in his recovery. He can run with his mum on the beach, join a sports team and even go on a school camp without worrying about what might go wrong, being away from home.
One of the downsides of post-transplant life is having to take over 25 tablets a day.
“He found it really hard at first,” Angela said. “He said he can’t do it anymore but knows that if he misses the tablets for a day, he can die.
“He also knows it’s a shorter life span (for people with his condition), 15 to 20 years post-op is average. They are crappy figures for a 14-year old.”
During his recovery from surgery, Jazz was boosted by the advance arrival of his new acoustic guitar courtesy of Make-A-Wish supporters.
“I saw a black box wrapped up in our hospital apartment, and I thought ‘surely not’,” Jazz said.
“I opened it, and I was super stoked.”
Total shock for Jazz
Jazz’s wish was something Angela thought about a lot. She imagined feeling emotional the day it finally came true, firmly believing the joy of his wish was something Jazz deserved.
The big day arrived not so long ago, with Jazz’s guitar pack (including his Telecaster electric guitar!) just appearing on the front lawn one Sunday morning.
Angela had told Jazz Make-A-Wish was coming to do some video interviews. She said Jazz had “no idea” his guitar pack would also arrive with the production crew, and when there was a knock at the door, he was none the wiser.
“He got a shock when he saw the beautiful blue boxes sitting in the driveway. He was very excited to see all those presents,” Angela said.
“As soon as he could, Jazz went straight up to his room to set up his new loop pedal and amp. Sounds were radiating from our house that night until about 10pm.
“Never in his wildest dreams would Jazz have got an electric guitar like that, and it’s all very precious; the guitars go back in the cases after he’s finished.
“Once, ages ago, he told me he was going to work on saving towards this guitar, and it was going to take three or four years. I could tell on his wish day he felt very special.”
Lucas gets a new heart
As Jazz has been getting accustomed to his shiny new electric guitar, the family faced yet another challenge.
Jazz’s dad Lucas, who has the same genetic heart condition as his middle children, recently had his heart transplant too.
Like they did first for Luka-Angel and then Jazz, the family rallied around him.
After some tense moments in the hospital, Lucas is taking some positive steps in his recovery.
“It has been a tough, tough journey this one,” Angela said.
“More like Luka-Angel’s (operation) and less like Jazz’s. But we will get there. The kids are strong. They just amaze me. All of them.”
Every night I do a devotion, I put my ear to his chest and say ‘goodnight my beautiful, courageous heart’, and I said that for the last time before his surgery. Then I just said to him ‘you’re so brave’.Angela Jazziah's mum
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