Monthly Archives: January 2022

Photo of Maryjo smiling at the camera.

Youth Advisory Group is now recruiting

Let your voice be heard – Youth Advisory Group now recruiting!

At Very Special Kids, we are always inspired by the strength and resilience of the children and young people we meet. If your life has been touched in unique and special ways by having a brother or sister with a life-limiting illness, we want you to join the conversation and have an impact on the way we deliver our services. 

The Youth Advisory Group (YAG) is a new initiative, set to give very special siblings between the ages of 14 to 25 a platform to be heard. Very Special Kids’ sibling, Maryjo shares her excitement for the new program.  

“It’s important for young people to just feel heard. So many kids want to be given responsibility and have a chance to make a difference. Especially when it impacts them.” 

Photo of Maryjo smiling at the camera while holding a dog.

YAG members will have input into the services we offer young people. They will have input into new programs and provide feedback on what is important to them and their families.  

Maryjo shares, “I’ve been involved in member run organisations’ before, and it makes such a big difference. By allowing young people to be heard, you create a program they want.  

“It’s not like working on a project at school. You are working with a team to create something real. Rather than just schoolwork. You are helping actual people.” 

The YAG offers young people a great platform to develop leadership skills and connect with other like-minded young people to exchange ideas, mentor others and understand the complexities of having a sibling with a life-limiting condition.  

“You gain so much from the experience of meeting someone, who understands what you have been through on a more personal level.” says Maryjo. “Everyone’s going through something different – they learn differently, cope differently. By hearing from siblings who are all different ages and have different lived experiences you can gain so much insight.” 

YAG meetings will be held bi-monthly and can be attended by siblings from across Victoria. We want you to lead us and advocate for what is important to you, so we can work to make it happen. 

Maryjo shares, “I’m excited to join the Youth Advisory Group to help other young people who have experienced or are going through what I have been through. If you have ever felt like something is missing, or something needs to be added. Remember, you can be the voice to get that done.”

Youth Advisory Group_checklistV2

If you ticked YES to all these boxes than take the next steps and apply to make a change! Please complete the expression of interest form here by Friday 18 February and we will be in contact soon.
If you have any further questions about the Youth Advisory Group, please contact Jess on or Damienne on

Family smiling at the entrance of Annie's Cottage

A relaxing stay at Annie’s Cottage

Annie’s Cottage offers Very Special Kids’ families a secluded and relaxing holiday location. Located on Chetwyne Farm in the East-Gippsland region, the property has offered many families peace, serenity and a much-needed break from their daily life. Most recently, Jake and Natalie stayed at the property with their three girls and extended family for a weekend away. 

They kindly shared their experience on the farm, and what it means to them to be able to access a family holiday spot, free-of-charge.

If you are a Very Special Kids family, and would like to learn more about Annie’s Cottage please get in touch with us at 

Steph in her wheelchair, smiling

Steph’s story

Thirteen-year-old Steph has been in and out of hospital her whole life. At 10-weeks-old Steph was diagnosed with nystagmus.  

Then after years of extensive nerve damage to Steph’s hands, feet and mouth, the family received news that she has mitochondrial disease, a debilitating and potentially fatal condition.    

At age eight, Steph lost the ability to walk and after the death of her father that same year, Steph’s mum Kylie knew that her family needed extra support. Kylie heard about Very Special Kids services and decided to self-refer. 

At that time, it was more about getting help for Robbie (Steph’s brother) because I didn’t feel I had the capability or capacity to truly help him through all of this, but what I quickly learned was how much Very Special Kids supports the whole family, Kylie said. 

Thanks to the incredible generosity from across our Very Special Kids community, Steph and her family have received tailored support through counselling, advocacy, networking and peer activities which has helped everyone cope through the daily challenges of her illness.  

Steph shares, “Very Special Kids is the most amazing thing that’s ever happened to me. I have a disease that drains your energy, until you give up. I want other kids and families to have faith. I want other kids to look their disease in the eye and say ‘you suck, but I can beat you’. The team at Very Special Kids has helped me to see that.”  

Steph also stays at our children’s hospice where she enjoys taking part in sensory and visual therapies while being cared for by our multidisciplinary team. By staying at the hospice, Steph’s family have received much-needed respite. “Going in you just instantly feel at home… In every way they think about ‘how do we ease the burden?’,” says Kylie.  

“Very Special Kids has given me the confidence I need to continue with a happier life. I’ve made so many different friends there, and it’s just truly inspiring to see people get up, and come and look after sick children,” said Steph. “When I think of Very Special Kids, I think of how much love they give and how much determination they have. What they do is amazing. It’s unbelievable. It’s spectacular.” 

Meet Noah – A Very Special School Captain

Very Special child, Noah, is proof that leaders come in all shapes and sizes. The 11-year-old, who was born with Mitochondrial disease, will be starting his new school year with the distinguished title of School Captain. A big advocate for diversity, Noah shares what excites him most about being a leader.  

“There are kids at my school with a lot of different disabilities, and we are often not represented on TV or in movies. You just don’t see many disabled leaders, and I want to be part of changing that.” 

Noah, who normally gets around in a wheelchair he calls Bumblebee, was born with Mitochondrial disease (known as mito) – a debilitating and potentially fatal condition that reduces the ability of mitochondria to produce energy.  

“Mito is the powerhouse in the cell, and it affects me from the tip of my head to the tip my toes. It can sometimes make me really tired,” explains Noah. 

Born at just 29 weeks, Noah had an allergic reaction to everything his parents and carers attempted to feed him at birth. At 18-months old he began to suffer from stroke-like episodes and has experienced eight metabolic strokes in his lifetime.  

Although now able to eat some ‘safe’ foods, the exhausting effort it takes to eat them necessitates that he has a tube feeding him a special blended diet directly into his stomach 24-hours every day. 

Despite the impact of his condition, Noah, is dedicated to living his life to the full potential and being a role model for other children who have a disability or life-limiting condition. 

Noah is dedicated to showing his school community what is possible when living with a disability.

Noah is dedicated to showing his school community what is possible when living with a disability.

“I want to have an impact on the school community and show kids with disabilities what’s possible. I know what it is like to have a brain and body that works differently in some ways, but in many ways, we are all the same – we all want the same things – to have mates, to laugh, to learn, to be awesome!” 

Noah’s family were referred to Very Special Kids in 2015, shortly after he received the diagnosis of Mitochondrial disease. For the past five years, the family have been supported by one of our Family Support Practitioners, Pauline.  

“When I met Noah, he had just turned seven years old,” says Pauline. “He sat next to me on the couch, assessing if I was worthy of his time, before proudly sharing his latest Lego creations.  Even at seven, Noah had an effervescence, an unmistakable energy, bubbling out of his personality.” 

“He proceeded to explain to me that he had been unwell, “but just with a muggle sick – not the mighty mito sick”. The Harry Potter analogy cleverly illustrated the difference between the common cold kind of sick that everyone gets, and the very individualised challenges that Noah lives with.” 

Noah’s mother Kat shares, “We love Pauline so much. She once said, “I listen to people who are hurting, and bear witness to their pain” which is such a beautiful description. But she does it with such love and wonderful intuition too. She always seems to know when to give us space to process new information or big changes for Noah, but she also knows when to keep calling. 

“There are not many people you can honestly and openly talk about such darkness with and at the same time laugh about the wonderful moments. She is magical. Just knowing she is there and there is nothing I can say to her that will shock her is a big deal.” 

Noah has made lifelong friendships with other children who have stayed in the Very Special Kids hospice. He has attended the camp program and enjoyed special events at the hospice.  

Noah says, “I love playing with my friends at the camps. I also really love when the fire trucks and motorbikes visit. We get to go on the back for a ride, it is so much fun!” 

When asked what made him want to become School Captain, Noah shared that the leaders in the Paralympics inspired him to stay active and share his voice for change. Noah takes part in a number of wheelchair sports including basketball, tennis, and powerchair soccer. 

With a mixture of nerves and excitement, Noah will be taking on his new leadership role at the beginning of the school year. “I want to be a leader of my school because my future job might need me to be a leader. I want other kids like me to know that there are no limits to life and to always have fun.” 

Watch Noah’s full School Captain speech here: 

According to his Family Support Practitioner, Pauline, Noah has continued to capture the hearts of people around him with his playful, upfront, and determined self. Together, Noah and his mum Kat have a connection that warms the hearts of everyone in the room.  Clearly, the pleasure is all mine, in supporting this family and I vicariously share the pride that comes with Noah’s achievements. What a trooper he is!” 

The Death and Dying Conversation

Written by Pauline Hammond, Grampians Region Family Support Practitioner 

I attended the family home armed with story books, craft supplies, and some apprehension about the conversation.  Family members gathered around me with bowed heads, tired eyes, and tear-stained faces; some with cheeks still wet. The young and the old. They looked at me expectantly. 

I asked, “Who knows why I am here?”. 

One brave little voice answered., “Cause our brother is going to die”. 

My response, “And what do you think that means?” 

“That he won’t live here” 

“That he won’t have any more birthdays” 

“That we will be sad”  

“That he won’t be sick anymore” 

“That mum and dad will cry”  

“That his body doesn’t work” 

The children began, and with some encouragement, led the conversation.  The adults listened as each child expressed their thoughts, without judgement, and without fear.   

“Why do you think we have a funeral?”  

“To say goodbye” 

“To have a party” 

“For everyone to come and bring food” 

“To bury the body” 

“So we can see the grave” 

“What do you believe happens to our body when we die?”  

“It turns into an angel” 

“Our spirit floats up to heaven and we play on the clouds” 

“We come back as kittens and puppies” 

“We protect our family” 

“We are ghosts” 

“We turn into dust” 

“What are you worried or scared about?” 

“That I will die too”  

“That mum or dad will die” 

“Who is going to look after me?” 

“That we will be sad forever” 

“That our smiles are all gone” 

 and finally…. “Who can you talk to?” 



“My friends’ mum” 

“My teacher” 

“My auntie” 

“My big brother” 

Talking about death and dying is tough. Talking about death and dying with children, is really tough, but it can also be enlightening.  The conversation is an opportunity for children to be curious, to express themselves, to be heard, and to identify where to turn for help when the emotions feel too big. Having the conversation can dissipate the fear often associated with death.  It can validate feelings, calm insecurities, and clarify for adults what the children are thinking.     

The death and dying conversation is hard, but having it will begin a process of understanding and acceptance.  A process that will be revisited by children many times, as they reach new developmental milestones and have a greater capacity for cognitive consideration.  So, what do you think happens to our bodies when we die?  I’m all in for the kittens and puppies philosophy.  

(Note: This conversation is a compilation of many comments shared by children.  It is not a singular representation, although it could be.)

Written by Pauline Hammond, Grampians Family Support Practitioner

 Pauline Hammond - supplied cropped