Two adults and three children are sitting outside with green trees and bushes behind them. They are smiling at the camera.
Apr 2022

Running for Monique

An ‘angel on earth’ is how Danielle would describe her late daughter.  

“She didn’t become an angel. She always was one. Monique taught us so much in her short life, and we are just trying to carry on the good she left behind.” 

A week before her fourth birthday, Monique was diagnosed with diffuse intrinsic pontine giloma (DIPG), an aggressive childhood brain tumour that develops in the brainstem, affecting the nervous system. 

A young girl is smiling at the camera. She is wearing a brightly coloured dress and a tiara on her head.“Monique was always a very bubbly little girl. Her sisters would always call her the ‘queen of the house’ – a bit bossy, but very loving and caring. For a little person, she had a big personality,” shares Danielle. 

“It was horrible to see what this tumor was doing to her and her body. It took away all those things. She was still there at the end, but she couldn’t walk, she couldn’t talk. It was just horrible to watch.” 

Monique died 13 months after she was diagnosed, leaving behind her loving parents, twin sister Zoe and older sister Olivia.

Six years on, Monique’s family still spend every day remembering their vibrant, confident, and loving daughter. 

“Grief doesn’t just end, it is ongoing,” shares Danielle. “Sometimes fundraising for Monique can be sad and stir up those emotions. But participating as a family really highlights how beautiful and special, she is to us.” 

The family have decided to honour their daughter’s memory by taking part in Run Melbourne this year, raising vital funds for the children and families supported by Very Special Kids.  

“We fundraise for those who have helped us, and I truly believe what goes around comes around. When Monique passed away the care from the hospital and the palliative care team suddenly ended. Thanks to Very Special Kids we didn’t feel so alone, they were there to pick up the pieces.” 

DIPG is known as one of the most deadly childhood cancers. They were devastated to be told there is nothing they could do for Monique.  

“This is one of the worst tumors, and unfortunately there is no chemo, there is nothing. We just went into shock. I was sitting there shaking. I just couldn’t believe what was happening.” 

Danielle and Darryl were referred to Very Special Kids by The Royal Children’s Hospital, Melbourne. Their Family Support Practitioner, Jenni, was based locally, making it easier for the Lockington based family to have regular visits. 

“I don’t know where we would be without Jenni. I can’t speak any higher of the love and support Very Special Kids give to each and every family across Victoria.” 

Three young girls are smiling at the camera, they are wearing bunny rabbit ears at Easter time.“I remember Jenni coming to our house and meeting Monique and the girls. It was nice to speak to someone that just got it.” 

Jenni was there for the family during Monique’s final days, helping Danielle and Darryl navigate difficult conversations with Zoe and Olivia, while they tried to cope with their own grief. 

“We didn’t want to upset the girls in the early stages. But when it got towards Monique’s end of life, we had to have that conversation with them. It was good to have Jenni there to help prepare the girls and better understand what was happening. She gave us lots of resources, books, and craft activities to help them with their grief.” 

Now, the family honour Monique’s life in many ways, running a Pink Day – Monique’s favourite colour – at her school and other fundraising events that can help to raise awareness of DIPG and other life-limiting illnesses that impact children and families across Victoria.  

“The more noise you make, the more you will be heard. So, we just keep battling on. It’s exactly what Monique did, and I promised her I would never give up.” 

“I feel so privileged to still be able to tell her story, almost six years on. It warms my heart that people still speak of Monique’s name. She’s not forgotten about, she lives on through our fundraising and memories.” 

Danielle is participating in the Nike Melbourne Marathon Festival in memory of Monique – so other children and families can receive the emotional, clinical and practical support they need to navigate childhood life-limiting illness.  

Help families like Monique’s by supporting Team Very Special Kids at the Nike Melbourne Marathon Festival on Sunday 2 October.  

Categories: Family News