hi guys!
On May 20/21, I’m joining a team of people taking part in the Very Special Kids 24 Hour Treadmill Challenge. We’re raising money for children like Seb and Charlie Burnet - I’m including an article about them, and some words from their mum below.
What this family has been through is heartbreaking, and I’m hoping to be able to help them and other families going through similar circumstances.
If you are able to make a donation, however small, thank you 
Love like there is no tomorrow for Charlie and Sebastian Burnet
LIFE was beautiful. There was a wobbly toddler and a baby on the way. The kids were to grow up as little buddies, just 17 months apart.
Richard Burnet, their proud dad, had landed a dream job. A Bombers fan since childhood, he was the new chief commercial officer for the Essendon Football Club.
In no time his little boy and unborn son would be old enough to huddle in scarves and jackets with him and his wife, Danielle, watching the footy at the MCG.
They’d eat hot pies with sauce. See the Bombers fly up. The kids would grow up nicely in this family cocoon.
At home, already they were celebrating 16-month-old Sebastian’s milestones. They ticked them off, impressed with his cleverness, like any normal parent.
But in a torturous few months, the Burnet’s world crumpled. Sebastian missed checkpoints and doctors found he had a form of leukodystrophy. A rare and deadly genetic disease.
At first, the Burnets disbelieved the predition that their walking son would be in a wheelchair by his next birthday. But he was.
He started falling over. (A hundred times a day, Richard calculated once.) His tenacity kept him trying - with the support of someone’s hand, then with two hands, until finally he could only be carried places.
Now, at aged three, he is not expected to be around to celebrate his fifth birthday. He can’t talk, but he can smile, chuckle and cry for now.
His food goes directly into his stomach through a tube. He struggles to keep his eyes open. His sight is failing. He can’t sit without support.
It has affected his understanding. He can’t remember his joy at walking the length of the loungeroom or how it felt to splash his arms about in the bath. Just a year ago.
It broke their hearts, yet it was only the prelude to a worsening nightmare.
Their newborn, Charlie, also tested positive to the disease. Now 22 months old, he has never walked, or talked, and his chubby little limbs that mastered a crawl, are already showing signs of slowing.
“It’s like I walked into four MCGs full of people and I happened to sit next to the one person, Danielle, who was also a carrier of this disease,” Richard explains the ridiculous odds. And even then, there was only a 25 per cent chance each child would suffer from it.
There is no expectation of a happily-ever-after. But their story is worth hearing, because it’s about a family trying to celebrate life under the shadow of death. To love their sons like there is no tomorrow.
It’s worth hearing because it shows that lives of substance don’t need to last 80 years.
“We don’t have long with the boys, so we don’t want to waste our time in misery,” Danielle says.
Richard adds: “That’s how we see it. There are people who are worse off than us - sure, they are few and far between - but some people lose a child or two children just like that.” He quietly clicks his fingers.
“At least we have this time to say goodbye.”
Richard was the first to think something was wrong.
Sebastian, cuddly, fun and warm, and prone to showering his little brother with sloppy kisses, would sometimes sit flicking page after page of his books for two hours at a time.
His new toddler walk stayed awkward and clumsy as his peers moved quickly to a run.
The early, tentative appointments for Sebastian with specialists soon after Charlie was born, turned to a flood as, one by one, disorders like autism were ruled out.
They spent several hundreds of dollars every week on a smorgasbord of specialists, until Sebastian was given an MRI - a brain scan - at the Royal Children’s Hospital three months later.
The scans showed a cloudiness where there should have been white matter in his brain. There was a serious problem, which needed further testing.
Danielle and Richard were called to an appointment on the 10th floor in the RCH’s metabolic unit. They, their sons and Richard’s parents Jillianne and John, crammed into a little consulting room.
There were also four medical staff, some toys in the corner, a few chairs, a table and, on it, a box of tissues.
The bad news seeped out with every sentence.
They heard the scenario for Sebastian’s short life. The effects of this disease with no cure. They heard the chance that Charlie might also have the disease, but everyone drew hope from the 1:4 odds.
This lightning surely wouldn’t strike twice, would it?
Their legs carried them from the room out of the hospital, home again. They looked at each other, but couldn’t talk. They didn’t feel strong enough to survive what lay ahead.
“One minute were were going down the path of looking for kindergartens and schools and the next we were hit with a bombshell,” Danielle recalls.
Richard hit the computer madly to learn what he could about leukodystrophies. The couple cried their hearts out. They tried to imagine how it would look for their little boy to slip away, but couldn’t.
And deep down they thought Charlie would be OK.
“The toys Sebastian got for his first birthday, that we knew he’d never play with, we thought at least Charlie would get to play with them. And Sebastian’s sneakers that were in the cupboard with hardly a scratch, well Charlie could wear them out instead,” Richard describes their cling onto slender hope.
As Danielle and Richard discovered doctors had no treatment for Sebastian’s form of the disease, they decided to have Charlie tested, but to let the results rest with their RCH specialist till they were strong enough to hear.
“We weren’t able to suffer any more bad news without just going into total meltdown,” Danielle recalls.
“And we didn’t want to over-analyse poor Charlie.”
They spent the next three months rallying their energy, then felt a niggle of uncertainty. Wouldn’t the doctor have called them anyway if the news on Charlie had been good?
So they met again in that same consulting room. The same medics crowded in. The tissues were still there on the table.
Nobody could find no words to soften the devastating news. The doctor already insisted Charlie’s blood be tested, retested and retested again. This family didn’t need to suffer anymore with a misdiagnosis.
But Charlie had the same disease. He was also unlikely to reach the age of five.
“We left the hospital that day in much the same way as we had when we heard about Sebastian - but this time we had lost hope. We’d been pretty confident Charlie was ok. He’d just seemed so normal …” Richard says.
There was no wondering. There was no question about a cure, no doubt about what would lay ahead. Both of their boys would gradually lose their movement and cognitive function.
The couple knew they would die from a part of their body breaking down, or from pneumonia. And it would happen far too soon.
“The only thing we could do was to go home and love our boys,” Danielle says.
It’s been a test for their Christian faith but their minds are settled at a point that, for some reason, God chose them to care for two special little lives.
“If we were given the choice between having Sebastian and Charlie as they are or never having children, or even having two children that aren’t Sebastian and Charlie, we’d go down the same path again,” explains Richard.
“I crave being with the boys when I’m at work. The club have been brilliant. They told me ‘When you want to go on the long-term injury list, just let us know’.”
Two years ago, Sebastian nestled into his car seat after his cousin’s second birthday party. Richard swung into the driver’s seat and peered behind him to catch his son’s eye.
“Sebastian, say ‘dada’,” he coaxed, elated when the quiet lad replied with a “dada” of his own.
It was the third time he said it in his life and was the last. Richard will remember that moment forever. It brings tears to his eyes now as he recounts it. These moments are precious, but they make the pain of his deterioration sharper.
“They make me laugh. Both of us. We have our good moments still. It’s important to make good, memorable moments,” says Richard.
And Danielle: “If we stopped reminding ourselves of what we have, as opposed to what we’re going to lose, I wouldn’t survive.”
Sometimes they can see past these hard times, but know it will only come with the hope of a new baby, genetically screened to be healthy.
“If we’re lucky enough to have a healthy child, that could be a light ahead for us,” Richard says.
They tear up occasionally, but they want to tell their story while they are still strong enough. Their boys are the faces for Very Special Kids’ major appeal next month.
But their experiences are not just helpful for others with sick children. Richard has high-flying mates with fit kids who have a photo of Charlie and Sebastian on their fridge as a reminder to spend time with their families.
“I haven’t been afraid to give some friends a wake-up call when their priorities aren’t aligned with what matters,” Richard says.
“For us, we have to make the most of every day. To make sure we’ve done our best for the boys. Everybody should be doing the same.”
In Danielle’s words, this is how VSK supports them:
"Our journey with Very Special Kids began in 2009. Not long after our two children, Sebastian and Charlie were diagnosed with a terminal illness called Multiple Sulphatase Deficiency, did the Royal Children’s Hospital suggest we connect with them for help.
At the time we had no idea how Very Special Kids could help me, my husband or my children. We were in a state of shock, didn’t understand anything to do with disability, palliative care, and thought we could be our boys’ everything! To paint a picture at the time, my oldest son, Sebastian was two years old, could walk a little, mumble, eat orally and seemed ok, easy to manage. Baby Charlie was just that, he was four months old and absolutely delicious. How could any parent foresee the deterioration of their child, or in this case children?
Moving forward some years, our sons’ health regressed significantly. This was emotionally and physically exhausting for us all. As family members could no longer help with the medical requirements we had to turn to Very Special Kids for respite and counselling and as the years pass we have picked up more support services they offer, more so now because we have two more children (both healthy thanks to IVF), Taylor and Christian.
Counselling Support
This for me has been a fundamental element for my mental health and understanding. Each family has a family case manager who you (and family members) can visit as often as needed. I went quite often. I could vent all my agony and I cried a lot. I still continue to go as they understand the darkest thoughts and hold no judgment.
Respite
There is a friendly eight bedroom hospice in the middle of Malvern. It has a large common area, dining and open kitchen, tv sitting room with bean bags and ball pit, a sensory and music room and a massive bathroom with a killer of a hoist to lower the kids into the bath. Outside there is a sensory garden, disability swing and play equipment. Adjacent to the hospice is the family accommodation - this accommodation is well needed for those who travel from the country. Oh and I should not forget the very important carers, nurses and on-call doctors who care for these darling children during their stay.
Sending your child away so you can go on a holiday isn’t an easy decision, however respite for our family and many like ours is critical. Care for our boys is around the clock, their medical needs is complicated and we require in-home carers so a little R&R is needed now and then.
For the boys, it is kind of like a holiday for them. The staff are divine. They fight over cuddles with the boys, pamper them with massage and get them working on artwork for mums return! Family and friends are allowed to visit them which makes it so much easier for them and us being away, and because it is staffed 24/7 we can call anytime, and I do.
The admittance paperwork is in-depth, as every child who visits has very high needs. As our boys stay often enough the staff are familiar with the routine, medications and their likes and dislikes. Also, as our boys are in palliative care, communication between Very Special Kids, the Royal Children’s Hospital Palliative Dept and the Victorian Ambulance is openly discussed amongst them and updated during the stay.
Our other two children, Taylor and Christian also have their needs. With the vast limitations and prioritisation they experience it’s nice to give them some time away from the family routine.
End of Life
Very Special Kids have a private room in the hospice for end of life. It’s horrible to think about it but when you know the outcome of a family member planning is important. This room is for the child and family to stay during the last days. Here you have privacy with doctors, nurses, carers, councillors all close by 24/7. We plan to use this special room.
In summary, Very Special Kids has given our family immense support. I can’t begin to imagine how we would have survived through the years without taking break or having someone to talk to when times are tough. We’re always greeted with such care and compassion that it feels personal, and our boys have an identity there. They’re not a number, they’re Sebastian and Charlie."
