Every mother knows those anxious few moments after giving birth, waiting to hear the first cry and being told your child is healthy. For Charmaine, that unfortunately didn’t happen.
At just over 37 weeks, Charmaine’s fourth son, Marcus was born via emergency caesarean. During labour, both Charmaine and Marcus experienced complications and he was admitted to the Neonatal Intensive Care Unit at his local hospital for close observation and specialised care.
Shortly after little Marcus was born, doctors discovered high levels of lactate in his blood meaning his body was making energy without oxygen, putting him at risk of organ failure. This was the first sign of a mitochondrial disease.
Despite being discharged two-weeks-later and returning home to his very excited three older brothers, Charmaine new something was definitely not quite right. Every time he finished feeding, he would make choking sounds and was always lethargic. Following her mother’s instinct, Charmaine took Marcus for testing which uncovered the milk from his feeds was going straight into his airways which could cause serious health problems if left untreated.
By the time he was just one, he also started experiencing clustered seizures. Dr Kaustuv Bhattacharya, Staff Specialist in Metabolic Genetics at The Children’s Hospital at Westmead suggested Marcus should partake in a genetic study to help find answers to help manage his condition better.
Nothing could prepare Charmaine for the results - her son had the rarest type of mitochondrial DNA disease in the world, called FBXL4 mitochondrial DNA depletion syndrome. The room was still, and everyone was left crying, including their doctor.
Marcus’ condition was so rare that the first-ever diagnosis of its kind only happened eight years ago. There’s very little research on the disease and one-third of children pass away before the age of three. There is currently no cure.
“At first, I cried when they told me his diagnosis and then I just said to them, what are we going to do about it?” Charmaine said.
The best treatment plan available for the family was to manage his symptoms and treasure every precious moment they have with him.
From the very beginning, Clinical Nurse Consultant, Tracey was there to provide the family with the best care possible. From coordinating appointments to teaching Charmaine the vital skills to care for Marcus, she has supported the family through all admissions and long hospital stays.
It’s Tracey paired with the family’s Aboriginal Health Worker in Palliative Care and Chronic and Complex Needs, Tanya, that have been Charmaine’s pillars of strength and support. In fact, Tanya’s position is the first paediatric role of its kind in NSW and sees her working right across Sydney Children’s Hospitals Network to support her patients.
“Tanya and Tracey are just a god sent. The way they do their job, they go above and beyond. Both of them are genuinely lovely people and treat you as an individual, not a medical record number.”
It’s these special relationships Charmaine has developed with Marcus’ holistic care team that have helped guide her through all of the ups and downs of treatment. Above all, the team’s decision to refer Marcus’ family to the magic of Bear Cottage has been a standout.
As the only children’s hospice in NSW, Bear Cottage is a special place dedicated to caring for children with life-limiting conditions. It provides support, respite and end-of-life care for children and their families, in a warm homelike environment.
The whole family look forward to their week-long stays at Bear Cottage, where Charmaine can leave Marcus in the care of medical teams, and spend quality time with her other sons, nine-year-old Ethyn, 11-year-old Ayden and 15-year-old Josiah. The family often spend time in the spa and playing board games, soccer and cricket. At Bear Cottage, they can enjoy life’s simple pleasures - ones they normally wouldn’t be able to.
“There are no words to describe the staff at Bear Cottage. They're amazing and make you feel like the most important person in the world. They don’t just love the child that’s admitted, but they want to know about all of your kids,” said Charmaine. The family have developed special relationships with all Bear Cottage staff and love all the activities they are able to do there as a family. Marcus particularly enjoys time on the veranda, music therapy sessions, sensory room sessions or just watching the fish tank.
“There are some moments you’re just drowning, about to go under and Bear Cottage finds a way to pick you up again. Without Bear Cottage, I don’t even know where a lot of families would be, including my own.”
Each year, more than 500 families rely on Bear Cottage for their respite and support, especially during the festive season. To help families who rely on this truly special service, donate today.
The Warrior of Love
Marcus the Mito Warrior should never be underestimated.
His love for others never berated.
He is gentle, resilient and kind,
Yet one of the strongest boys ever you’ll find.
Yes he has been dealt a real tough blow
Yet he deals with it, the best anyone can know.
I absolutely cannot forget the day
When ten teams gathered in a room to say,
If Marcus survives, it's going to be tough.
Charmaine, you know, life will be rough
There's so much wrong, that cannot be righted
It was then, the warrior spark was ignited.
The warrior fought every battle he could,
With fortitude and honour as good boys should.
The blows kept coming but he bounced back strong,
Taking all that loved him all along
Through unfathomable depths all around town
His rollercoaster adventure going up and down.
The warrior’s battles are known afar
A legend that makes him an Tik Tok star
His smile crushes every bad thought
Inspiration this big, cannot be taught
His weapon, a huge smile and cheeky big grin
If you believe in the warrior, you'll always win.
This poem was written by Marcus’ doctor, Dr Kaustuv Bhattacharya after receiving his diagnosis.