Tag Archives: siblings

Two adults and two children are sitting out doors and smiling

Navigating the ‘return to school’ when your child is high risk

Everyone has felt the impact and lasting ramifications of the COVID-19 pandemic, no one more so than the children and families we support at Very Special Kids. Not only are they facing the difficulties of navigating their child’s life-limiting illness, but ongoing isolation from social and support networks has been tough for families throughout the pandemic. 

When schools reopened at the beginning of the month, many Very Special Kids families were faced with a difficult decision. Do I send my child/ren to school? Or do I keep them home?  

“There is no right or wrong decision, but it is fair to say the question has weighed heavily on families with vulnerable children, as they struggle to find the right balance for their child, themselves and the whole family unit,” shares Family Support Practitioner, Angela.  

The impact on families 

Kylie is one Very Special Kids mum who has faced this difficult decision. Her son Mitchell, who is seven-years-old, was born with a severe brain condition that causes him to have unprovoked and recurring seizures.  

“The last two years have been the hardest,” she shares. “Mitchell has been put on life support six times because they haven’t been able to control the seizures. It’s terribly traumatic for him and because of COVID only one parent can be there to support him.” 

Mitchell started school when the pandemic first broke out in 2020, while his condition has caused him to miss school, the anxiety of the pandemic and Mitchell being high-risk, has added another level of disruption for the family.  

“While many people are so happy for school to return and yes, it is important for children, their education and their mental health. There’s a portion of the community that unfortunately don’t have the same feelings when it comes to returning to school,” says Kylie. 

Another mum supported by Very Special Kids, Bronwyn, mirrors this sentiment. “I am having to make uncomfortable and possibly life-threatening choices every day sending my child and their sibling to school… We live in lockdown and my kids miss out on social events just to keep my very vulnerable child safe.” 

Families are experiencing a constant heart and head struggle. They want to ensure their child has the best quality of life, but the risk of exposing them is a very real threat for families of children battling illness.  

Family Support Practitioner, Damienne explains, “Very Special Kids families have felt a whole mixed bag of emotions. They are frustrated, worried, infuriated and lonely at times. One family shared with me that the “opening back up” has been even more isolating for their family as they try to keep their vulnerable child safe and well until things feel more stable. For now, they’ve had to make the difficult decisions around cutting back on work, keeping a sibling home from school and minimising any social interaction.”   

Angela continues, “As a Family Support Practitioner our role is to listen and support families facing these challenges and where possible, create opportunities that may help them keep their children engaged while the wait continues or to manage the feelings of uncertainty that comes with returning to the ‘world’ out there.”  

The impact on siblings 

Two children are smiling, playing on a swingFor Kylie’s eldest daughter, Isabelle, school should be a time of excitement and joy, however, the ten-year-old has felt quite nervous and anxious about the impact this could have on her brother Mitchell.  

“It’s a big responsibility sending her back and knowing that she could potentially get sick and bring it home, because at the end of the day she knows what the outcome could be. We know for her mental health, she needed to go to be with her friends and teachers.” Kylie says. 

While the return to school has caused a lot of guilt, Kylie has learnt it was best to be completely honest with Isabelle and not try to sugar coat the situation. “We can’t say that everything’s going to be okay because we don’t know that it will be. We can only do the best we can. Whenever Isabelle would say she was nervous about going back to school, I would say, “Well, I’m really nervous too.” Just so that she doesn’t feel alone.” 

Kylie’s family have been supported by Very Special Kids since 2019. She shared that this family support has been extremely helpful to Isabelle, making sure she receives the attention and care she needs. 

“It’s been amazing to receive support for the whole family, especially Isabelle. We have a Very Special Kids volunteer who is like a big sister to Isabelle. She suffers from terrible anxiety, and it can be very difficult for her as Mitchell’s sister. She doesn’t get a normal childhood, so having dedicated time for her and her volunteer has just been great.”  

The therapeutic support from her Family Support Practitioner Damienne, has also helped Kylie to navigate her emotions during this difficult time. 

“I’m very thankful for Damienne. She is there whenever I need her. She’s always checking in, just seeing how Mitchell, Isabelle, myself and Shane are coping. She’s also done some sessions with Isabelle to try and help her manage her worries. I am extremely thankful. Thankful for all the resources she sent to me and the hours on the phone talking – it’s been wonderful.” 

“As parents of vulnerable children, we have to be hypervigilant. Even with Isabelle, now that she’s at school we have to be careful what she does at home. Making sure that her hands are clean when she plays with Mitchell and telling her she can’t really give him kisses is heart-breaking. Things like that is just what other people would take for granted”. 

Feeling isolated from the world 

RowlandsFamily4For families who have made the decision to keep their children home full-time, the decision does not weigh any easier. One family shared, “since June 2021, we have not been anywhere, prisoners in our own home… We are isolated even in normal times let alone now, more so now because no contact with work and school, social circle even smaller. We’ve been forced to keep our children home and continue remote learning…I have effectively lost 75 per cent of my income due to needing flexibility.”  

Many families with children and young people who are high-risk have felt isolated during the pandemic, their support networks shrinking as they need to limit their families amount of contact for the safety of their child.  

Kylie shares how her mental health has been impacted. “I really feel for all the families that are looking after vulnerable children. It’s not only the daily stress and anxiety that comes with looking after a sick child, but it’s also looking after your own mental health.” 

“I’ve been struggling with PTSD just because of all the trauma that I’ve seen Mitchell go through. There is layer upon layer, and it’s tough. At the moment, there doesn’t really seem to be a light at the end of the tunnel because we don’t really know how long this is going to hang around for.” 

When asked what she would like to say to other Very Special Kids families who are experiencing these similar emotions she said, “I hope that by hearing how much others are struggling, other parents can feel a little bit more normal. It does bring a bit more comfort to know you are not alone and are supported. 

“I know from the outside, it might look like we are coping okay, but the reality is that every day can be a struggle and every day there are challenges. I think it’s a good reminder for other families to know they are not alone here. Reach out to Very Special Kids or your family and friends. Try to stay strong and lean on those who are in your corner.” 

Two adults and three children are sitting outdoors. The children are holding pig shaped toys and everyone is smiling at the camera.

10,000 swings for Very Special Kids

10,000 golf shots in 24 hours, might sound like a difficult feat, but for Very Special Kids’ parent, Trevor, it is a welcomed challenge to support his son Harry and fundraise for other families who are facing life-limiting childhood illnesses.  

Trevor and his friend Damien will be fundraising for Very Special Kids at the Curlewis Golf Range on Monday 21 February 2022 by taking 10,000 golf shots in 24 hours. They will be livestreaming the entire event on their Tredam Golf YouTube Channel and hope to raise $5,000 to help other Very Special Kids families, like his own.   

Trevor shares, “Throughout our journey, Very Special Kids have supported Harry and my entire family, so I really wanted to give back and help raise as much money as possible for this wonderful charity that helps so many families, including my own.” 

A baby is having a bubble bath, he is smiling and having a great time.When Trevor and his wife Eileen were expecting their third son, they imagined the pregnancy would run like any other. However, during a routine pregnancy scan, they were given the news that their baby’s kidneys were larger than normal. 

Their son, Harry, had a condition called posterior urethral valves, which causes a blockage near the bladder leading to kidney swelling and damage. Harry was born eight-weeks premature, with severe kidney failure. 

“When Harry was born, he had less than 10% kidney function between the two. After two weeks in hospital the doctors told us that he’s not going to make it, and to start preparing for the fact that he wasn’t going to live,” says Trevor.  

Trevor and Eileen never gave up, they stayed by their son’s side and after four months in hospital, the family were finally able to bring Harry home. He was on dialysis until 2017, and when he was old enough his father Trevor donated his own kidney for Harry’s kidney transplant. This changed his life and now at nine-years-old, Harry is thriving.  

“It was a challenging time for my whole family, and we are so grateful Very Special Kids was there to support us. When we had the transplant, Very Special Kids put us up in an apartment near the hospital so that we could be close to Harry. It allowed myself and the kids to be there to support him. 

A child is dancing and posing for the camera, he is wearing a boy tie and fedora hat.“It’s not often, a charity looks after the whole family of the people who have an illness. The impact on siblings is often forgotten, but we have two other kids that are going through the same thing and aren’t receiving the same level of attention as their brother. So, support for them and family days is something we can all look forward to together,” he says. 

This was the reason Trevor wanted to give back to Very Special Kids and decided to take on 10,000 shots in 24 hours at the Curlewis Golf Range. The challenge will be livestreamed for the entire 24 Hours, and Trevor shared that there will be some great prizes up for grabs every few hours.  

“We’ve got a round of golf for four at The Kew Golf Course, Lara Tyre and Battery are giving away $600 worth of tires, and there is plenty more prizes set to be announced during the event. I am so grateful to everyone who has supported, especially Curlewis Golf Range for hosting me and Damian for the 24 Hours so we can raise money for Very Special Kids.”  

I look at the other families going through similar things to what we have been through, and my heart goes out to them. Fundraising can help other families like ours, receive the care and support they need. I am doing what I can to help these other families who are going through a tough time or worse than what we’ve been through. Every dollar counts.”  

If you would like to support Trevor, you can donate to his community fundraising page here. Or tune into the livestream on the Tredam Golf YouTube channel any time between 7pm Monday 21 February to 7pm Tuesday 22 February.  

Youth Advisory Group Q&A

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. We spoke with Very Special Kids’ sibling, Jude about the new program and what it means to him to have the chance to join the conversation. 

In what way has having a sibling with a life-limiting condition changed your life?  

When some people go to the hospital or maybe the emergency room, it feels slightly stressful, or it feels very cramped. The smell of hand sanitiser might be a new thing to most people in 2020 and 2021 because of COVID-19, but for me, it’s just the smells of my childhood.   

Since I was 13, when my brother Joel passed away, I’ve learned a lot about myself. I learned a lot about life in general. It can sometimes be difficult to separate what has changed my life because of my brother, and what I have learnt from just growing up. 

What does it mean to you to be part of the Very Special Kids community? Has it helped to connect with other Very Special Kids’ siblings? 

I count Very Special Kids as a second family. Not just because of the support, but because of the genuine friendships that I’ve developed with volunteers and the other siblings who understand what I’m going through. The conversations I’ve been able to have and the relationships I’ve been able to build with different people has been amazing.  

A lot of people don’t understand that even when I’m smiling and I’m genuinely having a good time with them, there’s always a bit of sadness. Kind of just lingering there. But Very Special Kids is one of those places where I feel like I can truly be happy and be myself, having a great time, there is just a different type of understanding. 

Why do you think it’s important for young people to have a say? 

In this decade, young people are a bit more vocal and want to get involved. As the youth who are being supported by Very Special Kids, we can talk to other youth members, and understand what they want out of each program. Let’s say, I’ve gone to a camp, I’m able to see what the other youth members are experiencing and can take that experience back to the group. It really can allow events to be tailored to better fit the needs of different youth. Which is really awesome. 

Every sibling has a unique perspective and experience, why do you believe diversity is important in decision making? 

It is important to have diversity, especially in age, but also in experiences.  Each person is so different, and those different voices are going to make the experience much more inclusive to everyone. 

What excites you most about joining the Youth Advisory Group? 

It couldn’t be a better cause, or a better group to volunteer with than Very Special Kids, because it’s so close to my heart. Personally, Very Special Kids has impacted my life so much, so to give back in this way and be able to have the privilege of having a say means a lot to me. 


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. 

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 at jbirnbaum@vsk.org.au or Damienne at dmor@vsk.org.au. 

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 jbirnbaum@vsk.org.au or Damienne on dmor@vsk.org.au.

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.” 

Summer festival fun at Very Special Kids

Summer festival fun was on the cards as 25 adolescent siblings caught some sun at the Very Special Kids Adolescent Siblings Day on Thursday 21 January.

Grooving to tunes pumped out by DJ BennyB, those in attendance whooshed along the water slide, posed for summer-themed happy-snaps in the photo booth, and chilled out in inflatable pools and deckchairs. Delicious burgers and crispy chips were on the menu for lunch, with a decadent pool-themed cake for dessert.

The highlight of the day was undoubtedly slipping and sliding down the water slide to music, with Justin Bieber playing on high rotation.

Adolescent Sibling Days give high-school aged siblings of children with life-threatening conditions opportunities to connect with others experiencing similar circumstances, make new friends and have fun in a safe and supportive environment. The Adolescent Sibling Camp will be held in March, and will again provide adolescent siblings with such opportunities.

Very Special Kids would like to thank Grill’d Malvern, who donated burgers and chips for everyone; Cake Angels, who make all cakes for Sibling Days free-of-charge; and DJ BennyB, who generously gave his time as well as providing the photo booth and bubble machine.

Special thanks also to the team of six dedicated and trained volunteers who generously gave their time to help at the Adolescent Sibling Day.