Tag Archives: Family

Very Special Kids' staff members, Anna and Jenn, are standing outside at the Yarraville Family Day. They are smiling in the sunshine.

Yarraville Family Day

On Saturday 19 February, Very Special Kids’ Family Support Team opened the doors to our new Yarraville office for its first Western-Metro Family Day event. The Yarraville office is set on a green reserve which provides the ideal space to bring families together.  

We welcomed families from the Western suburbs of Melbourne to view the office and meet other Very Special Kids families for a day of fun and activities. Families enjoyed a paper flower making activity and a pizza lunch in the park. The weather was perfect, families were excited, and the Very Special Kids volunteers were crowned the “Seven wonders of the natural world,” as they kept the little ones entertained.   

Volunteers helping at Yarraville Family Day smile for the camera

Intimate local events, like this, offer Very Special Kids families a safe space to meet other families who understand what it is like to navigate childhood illness. As a result of COVID-19 this is the first opportunity a lot of families have had to reconnect. One Very Special Kids parent shared, “It’s really good for my kids to be able to see other Very Special Kids children in person again.”  

For the children and young people who attended, it was great to have the opportunity to play and have fun with other Very Special children and their siblings. One, 10-year-old child excitedly said, “I love coming to family days and to sibling days…can you do more of them?!”  

Very Special Kids support over 850 families across Victoria through life, death and bereavement. Our integrated approach includes emotional, clinical and practical support to improve quality of life and create positive, lasting memories.  

We are very grateful to Freemasons Foundation Victoria, for their generous support in making the Yarraville Family Day possible.

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.  

Family of two adults and a child smiling at the camera

Adventure Park – Family Fun Day

On Sunday 30 January Very Special Kids hosted our first family event of the year! Families supported in the Barwon, Grampians and Southwest Victoria regions reunited for a Family Fun Day at Wallington Adventure Park for a fun day roaming the grounds, enjoying all the rides and activities on offer.  

The Adventure Park has hosted Very Special Kids Family Fun Day for over a decade. This year, 120 attended, the kids enjoyed splashing in the water, and going on all the rides, most not leaving until the last possible moment!  

Three families enjoying a day at Adventure Park Geelong. They are smiling and waving at the camera.

Families have reported a very successful day at the adventure park, sharing their feedback on the enjoyment the day has brought to their whole family. Read some of the positive feedback parents had to share about their day: 

 “I loved the activities and the chance to talk with other families.” 

“Since losing Jonah, it’s a way my family remain connected with him.  It’s also a pleasure to meet other families and build long lasting friendships where we can all support each other.  It’s a great day out to simply have fun splashing around and enjoy a day away from grief.” 

“It was great to have the chance to do something fun together!” 

“The friendships we continue to make within Very Special Kids to know we are not alone.  It’s a great day out were we all can enjoy a ride, waterpark or just hang out away from grief. It is now our annual event for us as a family to enjoy.” 

“I am not in a position to afford this once yearly trip for my boys without the support of Very Special Kids.” 

“Very organised, staff and volunteers are available if needed. Lots of fun for all the family” 

“To make family memories, enjoy an outing with family that we normally couldn’t do” 

“Fun day out for the whole family, nice to catch up with the faces behind Very Special Kids, who help our family, not concerned about having all of our medical equipment with us because the staff and volunteers are around.” 

Adventure Park Geelong families_2

Image of Jessica smiling at the camera

Meet our new Family Support Manager – Jessica Birnbaum

We are excited to announce that Jessica Birnbaum has been appointed as our new Family Support Manager at Very Special Kids. Jessica has been with Very Special Kids for a decade, mostly as a Practitioner and more recently as the Deputy Manager of the department. She has significant experience in counselling support and has been a key support during COVID-19, helping to ensure families, staff and other stakeholders were continually considered and supported. 

We had a sit down with Jessica to learn more about her new role, her background and her advice to families considering Very Special Kids services.   

Can you share an overview of your new position at Very Special Kids and how you support the family support team? 

The Family Support Team Manager oversees the daily operations of the Family Support Team. This includes the development and delivery of therapeutic programs, regular engagement with families to ensure their needs are being met by the provision of high-quality service delivery and clinically supervising and supporting practitioners in their role working directly with families. 

You have been with Very Special Kids for 10 years, what has your journey been like so far? What inspired you to work as a Family Support Practitioner? 

My journey with Very Special Kids began back in 2006 when I was a disenfranchised, out-of-work actress, seeking new meaning and purpose in my life. I heard Sister Margaret Noone on the radio talking about the Very Special Kids volunteer program which I then went on to join and become a home volunteer for five years. This was such a beautifully rich experience, and I was so impressed by the organisation and their capacity to really make a difference in the lives of others that I completely changed career paths and went back to university to study Social Work. I went on to obtain a Masters in Family Therapy and work with homeless families and young people in a variety of roles before joining the Family Support Team as a professional in 2011. I still maintain a connection with the sibling I supported as a home volunteer, she was eight when we met, and she is now 24.  

What is something that other health professionals might not know about Very Special Kids?  

Very Special Kids stays involved with a family indefinitely after the death of a child. Grief doesn’t follow a lineal path – it is messy, wild and unpredictable in nature. By not placing timeframes around this, Very Special Kids is able to support families to do the work and tend to their grief as needed. We help them integrate the loss through counselling, therapeutic programs, rituals, meaning making and ongoing connection to a compassionate community with shared experiences.   

How would you like to see Very Special Kids programs advance in 2022?  

I am looking forward to strengthening the therapeutic component of the programs we offer. This is an exciting time to engage in evidence-based practice that meets the diverse needs of the families we support. We have several carefully crafted program proposals, currently in development, that will further complement our existing suite of programs. I am also thrilled about the launch of our Youth Advisory Group and continuing to increase capacity to include the voice, opinions and ideas of children and young people in new and meaningful ways. 

What is one piece of advice you offer when a parent is feeling overwhelmed navigating their child’s condition?  

Being overwhelmed is a completely normal and understandable response to navigating uncertainty. In addition, the systemic challenges faced by the families we support, can intensify the emotional load and serve to further disenfranchise. At Very Special Kids, we view the family themselves as experts in their own lives and it’s our job to help them mobilise existing resources as a mechanism for advocacy, change and growth. This is about offering choice at all stages of their support journey and recognising diversity as a strength. 

What is your favourite thing about working at Very Special Kids? 

The opportunity to continuously learn, grow and evolve, both professionally and personally. 

Do you have any advice for families thinking about using Very Special Kids services? 

It can be daunting and unsettling engaging with a paediatric palliative care service for the first time and developing new relationships with health professionals takes time. Very Special Kids is focused on meetings families where they’re at and providing them with the opportunity to live fully. We try to support the system as a whole and offer a range of services in a kind, compassionate, consultative way. 

Very sick, very special, and very well looked after

They say home is where the heart is and for this family, it’s all about sticking together. Alissa and Adam Higgins, parents of 15-year-old Jerome, or as they call him Jerry, 9-year-old Lily and 18-year old Claire, want nothing more than for their children to be happy and have the companionship of their entire family.

In 2001, when Jerry was just 3 months old he was diagnosed with Moebius syndrome and osteoporosis. In 2002, his father Adam was deployed to Afghanistan with the Australian Defence Force (ADF), but quickly returned home after a couple of months due to complications with his son’s illness. Adam is still a member of the ADF and fulfils his commitments at both sea and shore to this day. Jerry has since been labelled with complicated issues at later stages, these include epilepsy, autism and cerebral palsy. This means he is ambulant yet requiring assistance of a wheelchair when venturing outside the home. Jerry is also non-verbal and is non-orally fed

A lot of the family time for the Higgins was in hospital early on, as they strived to stay together. Even great grandpa was always around; making sure that feeling of home was wherever they were.
In 2002, after Jerry had been in the ICU, Alissa and Adam were referred to Very Special Kids by The Monash Children’s Hospital, as it was now very clear it was a life-threatening condition.

Alissa and Adam quickly came to find how helpful the support and facilities offered by Very Special Kids were, not only for Jerry, but for themselves and their daughters Claire and Lily.
While they remained dedicated to keeping the family together as much as possible, it was nice for Claire, only 3 at the time of Jerry’s birth, to be receiving some extra company that her parents couldn’t give to her as much as they would have liked to.

Alissa being Jerry’s full time carer, was especially thankful for the Family Support Worker, as she “gave us that assurance, that we were going to be ok, we would have our bad days and she let me know that that’s ok”.

Although many of Very Special Kids services were used by the Higgins family, it took Alissa 13 years to work up the courage to let Jerry actually stay in the hospice. As like any parent, the idea of being away from her ill child was a little hard to comprehend and she had grown accustomed to doing everything herself. It isn’t always easy to admit you need help but now Alissa see’s the benefits not only for her but for Jerry too “he loves it there, he gets a lot of attention, it’s all on him”.

“Jerry gets sick very easily so he hasn’t been able to maintain a regular school attendance. But at Very Special Kids he gets to socialise without the worry of getting sick… And it’s good that he loves it because you don’t feel that sense of guiltiness as a parent when you put your child in care.”

Alissa told us their families unity has increased since Jerry has stayed at the hospice, as having time has allowed for a less hectic lifestyle and they get to be together, and that is what they truly value most, “we’re lucky in that way”.

All the funds you raise at the 24 Hour Treadmill Challenge will go directly to children just like Jerry, who receive 24 hour specialist care at Very Special Kids Hospice. To sponsor a runner visit www.vsktreadmill.org.au


Family fun in the sun at Adventure Park Day

Around 223 parents, siblings and children descended on Adventure Park Geelong for a day of waterpark fun at Very Special Kids Family Day for the Barwon, South West and Central regions.

Abuzz with excitement and faces brightly painted, children had a blast whizzing around on go-karts, swooshing down enormous waterslides and swooping around on giant swings whilst parents were pampered with blissful massages.

Topped-off with a delicious gourmet barbecue lunch, families enjoyed a day free from worry and a chance to catch up with others experiencing similar circumstances.

The event was generously sponsored by Golden Farms, part of the Turi Foods company, who also provided six volunteers to help run activities. Special thanks also to the volunteers who assisted with activities on the day.

Bonding over bowling

14-year-old Ricky Ellul from Craigieburn has Neurofibromatosis, a rare condition that causes tumours to grow in his brain. The tumours have affected intellectual development and his sight, meaning he is now legally blind. However, they don’t stop the ever-positive Ricky from playing double bass, the drums and going tenpin bowling.

The uncertainty of Ricky’s future and the complications that come with his condition has put pressure on his family – parents Mario and Silvana, and Kristina (18), Adam (17) and Bianca (15). The family has endured Bianca having back surgery to assist with scoliosis, and Adam will soon have to an operation to correct severe flat-foot.

To help ease the pressure, Ricky and his family have been receiving special help from a trained home volunteer provided by Very Special Kids.

Volunteer Sam Fahnle went through the training in 2014, and now helps the family by taking Ricky out on weekend excursions, including his favourite activity, Tenpin Bowling – an activity Sam also loves.

The few hours without Ricky in the house on the weekend gives Silvana a chance to have a break and help out her other children, and most importantly, Ricky loves his time with Sam.

The friendship between Sam and Ricky has flourished, with Sam attending Ricky’s birthday and being the first person Ricky called when he found out his tumours had slowed their growth.

“Being a boy, it is good for Ricky to have a male friend to talk to,” says Silvana, “Having a male volunteer to spend time with gives Ricky opportunities to do activities he enjoys, but might not get to do as regularly otherwise.”

Sam is buoyed by the knowledge that his volunteering has a positive impact on Ricky and his family and is eager to recommend volunteering with Very Special Kids to other men. “It’s so worthwhile for the family. It’s only a few hours out of my time and it means so much to Ricky,” says Sam.

Please call 9804 6222 to find out more about exciting volunteer opportunities with Very Special Kids.

Family Christmas Fun at Very Special Kids

Around 430 parents, siblings and children supported by Very Special Kids attended the Family Christmas Party  on Sunday 22 November for a day of family fun.

Soaring and tumbling on the Aero Bounce proved to be a highlight of the day, with children also enjoying the animal farm, craft activities, DJ workshops, a Liberty Swing, footy throws and face painting.

The arrival of Santa was highly anticipated and, on a firetruck provided by the Malvern East and Windsor Metropolitan Fire Brigade, certainly didn’t diasppoint. Families also had photos with Santa in the ‘Santa Cave’ and family portraits provided to families free of charge by Heartfelt Photography.

The annual Very Special Kids Family Christmas Party enables families of children with life-threatening conditions to come together in a safe and supportive environment.

The Family Christmas Party would not have been possible without the support of 42 of our dedicated team of trained volunteers. Special thanks also to the Malvern East and Windsor Metropolitan Fire Brigade and Heartfelt Photography for their ongoing support.