Monthly Archives: November 2021

Lani and Beau’s story

Christmas is meant to be a time of joy, where families and friends reconnect and reunite, and life is celebrated. Sadly, for many families who are grieving the death of a child or children, Christmas time can be overshadowed by grief, heartache and anxiety.  

Simone and Rob have endured more heartache than any parent ever should — welcoming four children into the world and, tragically, losing two of these precious lives. 


In 2007, shortly after arriving at the hospital, Simone was rushed in for an emergency caesarean section.   

Simone shared, “It was a normal pregnancy. It wasn’t until the day Lani was born that we knew something was wrong. After arriving at the hospital, it very quickly became a whirlwind. Once the monitors went on my tummy, people started calling for a doctor. Suddenly I was getting wheeled down the corridor for an emergency caesarean. I remember my doctor lifting Lani and holding the knot in her cord, which was the problem. She was taken away immediately. My doctor said, “It doesn’t look good.” I was in shock, and I couldn’t stop shaking.” 

Her baby Lani was born with severe brain damage. Simone and her husband Rob were told the devastating news that Lani wouldn’t survive long. 

 “I remember getting to hold my baby for the first time when she was five days old,” says Simone. It was the most painful cuddle because we knew she wasn’t going to make it… We weren’t going to bring her home. 

Lani in hospital

They couldn’t bring themselves to take Lani home — with the enormous responsibility of her medical care and the fear of losing her at any moment. This was the first time Simone and Rob came to Very Special Kids for support.  

Thanks to generous donations from our supporters, Simone and Rob were able to stay in our dedicated family accommodation for parents in situations just like thiers. It meant Simone and Rob could be with Lani in a place where she was given the best quality of life and death — and they could focus on enjoying their precious but limited time with their baby. Lani sadly died after only 16 short days with her parents by her side.  

Thanks to supporters like you, our expert team was there to provide all the specialist clinical and emotional support the family required in those precious moments. 

A year later, Simone and Rob welcomed their beautiful son, Beau into the world. Bringing their baby home and watching him meet milestones that Lani never got to, was bittersweet. As the days and years went by, they watched their little boy grow and develop a personality of his own. 

Beau fitted perfectly into Simone and Rob’s life and it was a joy to see him become a doting big brother to his baby sister Coco. Shortly after Beau started school, warning signs began to appear.   

His behavioural abilities started to deteriorate, then he began to lose his physical abilities. An MRI confirmed Simone and Rob’s worst fears. Beau had a serious brain condition and there was no way to treat it.  

Simone shared, “We were told there was no chance of treatment. The doctors’ words were, “Take him home and love him.” And that was pretty much all we could do. We were constantly worried about him.” 

Untitled design (4)

On Christmas morning, Coco ran down the stairs eager to see what Santa had brought – but she came on her own. Rob noticed that Beau didn’t come down the stairs with his little sister,  like he normally did. 

“I ran upstairs to tell Beau to look at what Santa had for him under the tree.” says Rob. “He was on the floor. He just couldn’t walk. I thought, oh no, this is happening a lot quicker than we’d thought.” 

This is when Simone and Rob called on the support of Very Special Kids for a second time. With the help of our empathetic and dedicated supporters, we could provide their family with the practical and emotional support they needed during their darkest times. Everything from one-on-one counselling for each parent, to sibling support for Coco to help her cope with losing her brother.  

Coco thank you pic

At Very Special Kids, we believe every child has the right to the best quality of life, no matter how long or short their life may be, and every family is comprehensively supported through their most difficult journey. We were there with each family member right up until Beau died, at the young age of 10 years old. Then, continued to support them through their grieving. 

Sadly, there are many more families just like Simone and Rob’s facing the most heart wrenching experiences. As Victoria’s only children’s hospice, we rely on the support of people like you, to ensure seriously ill children and their families don’t have to endure their difficult journey alone. We need your help to give families the most comprehensive support they desperately need, facing a Christmas without their little ones. 

Click here to donate.


Meet our new Hospice Manager: Kirsty Blair

Very Special Kids are thrilled to announce the appointment of Kirsty Blair as our new Hospice Manager. Kirsty is a registered paediatric nurse with experience and specialist training in paediatric palliative care.  Kirsty will lead the clinical and Allied Health team towards an exciting future in our new hospice facility.   

Kirsty shares how her deployment to Afghanistan as a civilian nurse sparked her passion for paediatric palliative care. She talks about the exciting changes ahead for Very Special Kids and what can be expected from our new state-of-the-art hospice facility in 2023. She also shares her tips and advice for families seeking Very Special Kids services.   

Can you share an overview of your role at Very Special Kids and how you support the hospice team? 

As Hospice Manager, I oversee the safety, leadership, and guidance of our hospice clinical team, comprising registered and enrolled nurses, personal care workers and Allied Health staff.  My role is to ensure that the children and families supported by Very Special Kids are provided with expert clinical, therapeutic and emotional care they need to cope and create positive lasting memories during a difficult and often confusing time. I liaise with external agencies, hospitals, and internal committees to ensure we continue to offer the very best respite support, pain and symptom management and end-of-life care.  

It is important to me, that we nurture and foster a culture of care internally as well as for our families, so that our team is empowered, supported and safe through the process of caring for children and young people, and their families. I am passionate about trying to excel our hospice clinical team to make them the best in paediatric palliative care and give them the development opportunities, to collaborate and be involved in our vision for the new hospice facility. When everyone has the same vision and is striving for the same thing, it becomes quite magical! 

You’re originally from the UK, can you tell us more about your career and what led you to specialise in children’s palliative care?  

I have been a registered paediatric nurse for over 15 years, originally trained in the UK. I started my career as a paediatric intensive care nurse in Edinburgh and was given the opportunity to deploy to Afghanistan as a civilian nurse at Bastion Field Hospital. During my time in Afghanistan, I had the privilege to care for sick and injured civilian children who had been injured from the war, working with the ICU and Emergency. Due to limited resources and being in the middle of a warzone, I experienced and cared for many children at end-of-life and often saw death without support, dignity or choice. It had a massive impact on my life, aspirations and goals and fuelled my passion for paediatric palliative care.  

On my return from Afghanistan, I started working as an agency nurse in a UK children’s hospice called Richard House and within my first day there, it was clear to me that this is what I was meant to do. I progressed from being a senior palliative care nurse to becoming the head of care services, leading the hospice team through lots of change and remodelling. In 2019, I moved to Australia and worked for 18 months in paediatric intensive care, it didn’t take me long to realise I belonged in paediatric palliative care. When I heard about Very Special Kids, it felt like the perfect fit for me – I was really excited to join the team early this year as a senior nurse and now leading the clinical team through our hospice rebuild. It is an incredible honour.    

Very Special Kids is in the process of rebuilding its hospice, what difference do you believe this new facility will have on the way we care for our children and their families into the future? 

Having the first child come through the doors will be such a massive achievement, personally and professionally for me and the whole team. The hospice design is really focused on creating memories and living for today – it will become a vibrant, fun space for our children and their families, while offering the best clinical and therapeutic support available. Every area is being utilised to its full capacity, whether it is the soft play area, music room or gardens. The design is focused on incorporating both respite and end-of-life care, to ensure children and families have a suitable environment for all stages of their journey.  

The element I am most excited for is the hydrotherapy pool. Many of our children cannot go swimming in a standard swimming pool, so this will improve pain and comfort management and offer aquatic physiotherapy in a purpose-built facility. The fact they will be able to experience that with their families and siblings is amazing. It will truly be a great environment for families to make those positive, lasting memories together. 

Can you share some insight into the interim in-home respite service and how this program has helped families?  

The interim in-home service was implemented while services are temporarily paused at Monash Children’s Hospital, where our hospice is situated for the duration of the hospice rebuild. The in-home respite has really helped us reconnect and stay connected with families who have used our services before, as well as engaging new families. For a lot of families, the in-home support is more suitable to their needs, particularly during COVID. Although it is an interim service, we have already had a lot of positive feedback and it has helped families to build trust and rapport with our hospice team. 

For one of our families using the in-home respite service gave them the opportunity and time to hold a birthday party in the park. What seems like quite a small, simple act of respite, can truly have a great impact on a child and family.  

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

The hospice has such a fun atmosphere, when you walk in the doors at Very Special Kids, it is the polar opposite to a hospital environment. We have the capacity to sit with and support families’ complex illness and grief journeys, while fostering and sharing moments of joy, laughter, and relief together. It wouldn’t be unusual to see the team dancing and singing with the children and everyone dressed up (including Jaffa our therapy dog!) To the outside world, if you took a snapshot of that moment and asked them what they saw, the answer would be children having fun. It is important to me that the clinical support and care we provide to our children and families is in a safe, warm, and welcoming environment.  

We see families at all stages of their journey, we really want to ensure their child/ren are experiencing the best quality of life they can, while being surrounded with support, love, and joy. 

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

We understand how overwhelming and scary it can be to reach out for help in the first place. While there is no easy way to navigate this journey, it is important to remember you don’t have to face it alone. I recommend families take the opportunity of our interim in-home service, to slowly introduce their child/ren and themselves to the benefits of respite care. You can meet our highly trained staff in the comfort of your own home and gain a first-hand experience of how our services run.    

It is also important to remember that Very Special Kids offers a holistic approach to palliative care that extends beyond emergency and planned respite, and end-of-life care. We service the physical, mental and emotional needs of the children and young people in our care, and their families, so they are always supported in the way they need it most.  

Ready for kick off – Footy Fever Debate 2021

Football legends switched the field for the stage last Friday, battling it out in a heated debate which raised more than $147,000 for children and young people with life-limiting conditions and their families across Victoria.  

Hosted by Channel 7’s Jacqui Felgate at Crown in Southbank, the Very Special Kids Footy Fever Debate tackled the topic ‘midfielders are the most important players in footy’. 

On the affirmative side was Carlton AFLW Head Coach Daniel Harford and Collingwood legend Tony Shaw. The pair faced-off against former Carlton and Brisbane Lions full-forward Brendan Fevola and one of Melbourne’s greatest goalkickers and high-flyer, Russell Robertson. 

Untitled design (1)

After months of lockdown, the Footy Fever Debate marked Very Special Kids first live charity event since May. Guests enjoyed an afternoon of live music, delicious food, and a fast-paced auction before the debate kicked off.  

Both teams presented a solid argument, however there could only be one winner with Russell and Brendan proving that midfielders are not the most important players in footy! 

The Footy Fever Debate is the signature event of the Very Special Kids Piggy Bank Appeal. All proceeds of the event, help to provide specialist children’s palliative care to improve the quality of life for children and young people with life-limiting conditions and their families through every stage of their most difficult journey.  

Thank you to our special guests Jo and Rick Rawson, parents supported by Very Special Kids, for speaking about their beautiful daughter Everley and the journey they have faced since her birth. 

Special thanks to our presenting partners Lowe Living and 3AW and our supporting sponsors Crown, Lion, CM Liquor and Helping Hand Group. Without your support, the Footy Fever Debate wouldn’t have been possible. We would also like to acknowledge our Piggy Bank Appeal partners – ALH Group, Commonwealth Bank, 3AW and Toyota.  

We would also like to extend a thank you to football legend, Russell Robertson and musician Aaron Schembri for providing their incredible musical talents for the afternoon. Images of the event were captured by the talented Gavin Blue. Click here to see some highlights from the afternoon. 

Nike Melbourne Marathon Festival

Team Very Special Kids is taking on the Nike Melbourne Marathon Festival! 

This year, with your help, we are aiming to raise $50,000 to help continue providing specialist palliative care for children and young people with life-limiting conditions and their families. We are thrilled to have a team of community ambassadors who are taking on various distances across the festival in December.  

One runner participating in the half-marathon is Chris Renouf, who has a personal connection with Very Special Kids. 

Chris said “In November 2019 we lost our precious son Reggie to complications stemming from Infantile Onset Pompe disease. He was two years old. Whilst it will never be okay, it is more bearable knowing that Reggie was able to spend his last hours at the Very Special Kids hospice in Malvern surrounded by those who love him. Very Special Kids have been incredible for us from the time of Reggie’s diagnosis through to the continued support we receive today. We will forever be indebted.” 

“Very Special Kids is extremely important to me. They helped us tremendously through one of the most difficult time in our lives. And running was important to me immediately after Reggie’s passing – it was a way of having some time with him”. 

Chris, Tess (Chris’s partner, and mother of Reggie), Cameron (two years old) and Robbie (two months old), have access to ongoing professional counselling and a range support programs, free-of-charge, at Very Special Kids. Their family is supported by Very Special Kids Family Support Practitioner, Edwina Hargreaves, whose role is to support to the entire Renouf family at all stages of their journey.  

Hear why Chris and our community ambassadors are supporting Very Special Kids in the video below.  

To support Chris, or a Team Very Special Kids runner at this year’s Nike Melbourne Marathon Festival, click here.