Monthly Archives: September 2020

Adolescent sibling program creates lasting connections

There are many words to describe Maryjo Saliba – strong, resilient, courageous, positive, ambitious.

‘Bereaved sibling’ are two more words that also sadly describe Maryjo.

She is part of a unique group of young people who have experienced the death of a sibling and are supported by Very Special Kids.

In 2011, Maryjo was diagnosed with osteosarcoma, a type of cancer mainly affecting the bones of young people under 25 years of age, and in Maryjo’s case it was in the left orbit. Following treatment, and surgery to remove her eye, she is now clear of cancer and is in the fortunate position of needing only annual maintenance check-ups to keep on top of the condition.

However, only months after receiving the all clear, Maryjo’s younger brother James was diagnosed with the same condition. For the Saliba family it was very different dealing with James’ diagnosis. “By then, we knew how all the treatments and appointments worked” she said

James’ cancer quickly spread from his leg, to his lungs, and was deemed life-threatening. Towards the end of his life he was still mobile, in good spirits and the family managed his pain to keep him comfortable. James died at The Royal Children’s Hospital in 2015, just a few months shy of his 15th birthday.

Maryjo and James were always very close, and their identical diagnosis brought them even closer. “We were closer to being twins, not just siblings. We always had a good connection that way” she adds.

While James was undergoing treatment, Maryjo had a unique understanding of what he was going through. “I would say to him, is there anything you want to tell me? He wasn’t much of a talker, but always knew I was there” she said.

At only 16 years of age, Maryjo wrote her own eulogy for her brother, a challenging process for anyone to undertake. She wasn’t able to deliver it on the day of the funeral but knowing James would have wanted it to be heard, a family member kindly read on her behalf.

The Saliba family are supported by Kevin, one of Very Special Kids’ team of Family Support Practitioners. They have access to counselling through our bereavement program and have attended weekend camps, both as a family and specifically for bereaved parents. Maryjo has recently connected with a trained family services volunteer for support – they share an interest in medicine and whilst they are still in contact during COVID-19, they look forward to catching up face-to-face when restrictions allow.

Very Special Kids has an extensive sibling support program, and in 2019, Maryjo attended the annual adolescent weekend – a opportunity for young people who have, or have had, a sibling with a life-limiting condition to connect with others in a similar position. The adolescent program caters for young people aged 12 up to 20, Maryjo was 20 at the time.

Maryjo attended the program in the hope to meet someone like her and her hopes were fulfilled when she met two young people of a similar age, both also bereaved siblings. “It was so cool to find someone in the same position as me. So many similarities, our siblings passed at the same age, both our siblings played football, won the same awards. To find someone like that – it was spooky, but so refreshing in the same way” she said.

A year later, the three new friends keep in touch, even though this year’s camp couldn’t be held, and restrictions have prevented them from meeting. “It’s a friendship that you want to keep forever. We got to know each other through being bereaved, but also as a normal person” she adds.

Thank you for supporting our Giving Day

Thank you to everyone who donated and shared our message over the last 24 hours to make our first Giving Day a huge success! Together, we have raised an incredible $412,000 to help us continue providing essential family support and paediatric palliative care services to the children and families in our care.

12-year-old Steph, has Mitochondrial disease is debilitating and life-threatening disease that causes cells to die until. She and her family are supported by Very Special Kids and are the face of our 2020 Piggy Bank Appeal.

Please watch her video to you below:

Our Piggy Bank Appeal Giving Day would not have been possible without our generous matched funders, who doubled every donation to Very Special Kids for 24 hours.

Thank you to ALH Group, efm Logistics, Gaudry Foundation, Simply Energy, Advent Partners and BSH Bosch for your kindness and support.

Together we have helped to ensure that no child will have to face their incurable illness alone.

To learn more about how Very Special Kids helps families, click here.

Our first Piggy Bank Appeal Giving Day

We are excited to be holding our first ever Giving Day, as part of the iconic Piggy Bank Appeal, which is now in its 23rd year.

Due to COVID-19 restrictions, the usual sight of the giant piggy banks and tins rattling all over Victoria won’t be able to take place.

Regardless, Very Special Kids has continued to provide essential services to families throughout the pandemic, including psychosocial and end-of-life support across the state, as well as at our children’s hospice in Malvern.

Thanks to some very generous supporters, all donations will be doubled for 24 hours, from midday on Wednesday 16 September to ensure we can continue to care for families when they need it most.

Our Giving Day would not be possible without the support from ALH Group, efm Logistics, Gaudry Foundation, Simply Energy, Advent Partners and BSH Bosch.
Thank you for helping us ensure no child will face their incurable illness alone.

You can support the Giving Day here.

From childhood memories carer at Very Special Kids

Mandy Lobley remembers fundraising to fill pink pigs at school, but little did she know the fond memories she had of ‘the pig charity’ would later become such a big part of her life.

In conjunction with her role as carer in the hospice Mandy is studying genetic counselling at the University of Melbourne, and is what led her back to Very Special Kids.

Genetic counselling is a very specialised profession, and only two universities in the country offer a degree in it.

“It’s basically medical translating. When a family receives a genetic diagnosis, we can assist them to understand the clinical jargon, health risks, treatments and create plans for their family’s future. That’s the “genetic” part. The counselling bit comes into play when this information is distressing and patients or family members may experience uncomfortable emotions, we can help work through them and provide clarity,” Mandy said.

Due to the nature of her study, Mandy, along with her fellow students, were encouraged to become volunteers within a community organisation. The University recommended Very Special Kids and, as soon as she remembered it was the organisation that was part of her childhood nostalgia, she didn’t hesitate.

“I started volunteering in 2016 as a fundraising volunteer, but with hopes to become a hospice volunteer. While waiting for a training opportunity to volunteer in the hospice I learnt to tow the big pigs with pride, run merchandise stalls, and I even held my own fundraiser. But I always knew volunteering in the hospice was where I wanted to end up,” she said.

She did eventually complete the training to become a hospice volunteer, and fast-forward to 2019, she transitioned over to a carer role.

“I’ll be honest, the hospice was confronting at the beginning, and I was so nervous. Although, with the love and guidance of the Very Special Kids team I was able to relax and learn the language that our children speak. Many of them are non-verbal but have their own beautiful language that if you take the time to learn is so enriching. I feel so lucky that I am to be able to care for these kids, they have taught me so much.”

The role of a carer in the hospice, Mandy says, is to assist the nurses and therapists from a non-medical perspective.

“I think what makes a good carer is compassion and patience, its essential. It is important when working with our children to slow down, build a relationship with each child rooted in trust. It’s amazing how much more engaged a child can be when you both trust each other. It is a hard thing to learn and everyone in the Very Special Kids hospice has these traits,” she said.

Whole new community for Somerville family

When Jasmine was a new mother, she had gotten used to having little support due relocating as part of her partner’s career in the military.

But when her second-born, Alicia, was diagnosed with a rare terminal illness, she knew she couldn’t continue without more support.

“We were living in Canberra and I just couldn’t do it anymore. Alicia needed round-the-clock care, constant visits to the hospital and I couldn’t take care of her and my other daughter, Ruby, on my own anymore,” Jasmine said.

It’s here she made the decision that the family needed move back to Melbourne to be near family, and it was also then she was put in touch with Very Special Kids.

Alicia was born with Trisomy 18, or Edwards’ syndrome, a condition that’s usually detected in utero, but it wasn’t picked up this time until after she was born.

It’s also a condition that, Jasmine said, was day-by-day of not knowing if she would die. “I basically spent the first few months waiting for her to die, and when she didn’t, I decided it was time we just lived and carried on with life,” Jasmine said.

Jasmine had heard of Very Special Kids because of the Piggy Bank Appeal but wasn’t 100 per cent sure what it was they did exactly.

Little did she know the ‘pink pig charity’ was about to change her life.

“I was pregnant with my third child, Carter, and Alicia was almost two and we booked in for respite at the hospice. I was nervous about leaving Alicia because I’d never left her before, so Ruby and I stayed in the hospice as well but in another room. It was like I could breathe again. I slept all night for the first time in years and when I woke up both Alicia and Ruby were being looked after, they had been fed breakfast and were happy playing with the nurses and carers.”

“It was just a major relief that there was someone else who could take care of Alicia. It wasn’t a hospital, there was no poking and prodding of needles, it was just so warm and caring,” Jasmine said.

Jasmine booked into the hospice again following the birth of her son, Carter, so she could get extra help with Alicia while she recouped. The entire family were also connected to Family Support Practitioner, Heidi, for emotional and counselling support.

Very Special Kids Family Support Team provides the entire family, including siblings and grandparents, with emotional support at any time they need it. Heidi would soon become an instrumental support as Alicia was admitted to the hospice for end-of-life care.

“There’s no way I could’ve coped with her dying at home. I would not have known what to do and I would’ve blamed myself if something went wrong,” Jasmine said.

The family were able to stay onsite in the family accommodation, located next to the hospice, while Alicia was cared for by a team of nurses and Chief Medical Officer, Dr Bronwyn Sacks.

Alicia died just after midnight surrounded by her mum and dad.

“For the first week, I was in so much shock and wasn’t in the right head space to make decisions. But Heidi took control of everything, she had conversations on my behalf, organised the funeral, checked in on us, including Ruby – it just allowed me to just be with Alicia,” Jasmine said.

Today, Jasmine can’t speak highly enough of Very Special Kids and the role they’ve played in the years since Alicia died.

“The camps they provide are the best thing ever. Ruby has made so many friends through them, and she has really come out of her shell. The activities they put on for me as a mum  also allowed me to heal and find new ways to keep Alicia’s memory alive. I’m connected to people who get it and understand, I never stop talking about Alicia, she’s still very much apart of my family, and for my kids to talk about Alicia in the present is a huge mum win for me,” Jasmine said.

When asked if she would support Very Special Kids up-coming Giving Day, she jumped at the chance.

“I love teaching and I think talking about Alicia’s condition and our experience is so important to the education of medical professionals and the community. If I don’t talk about it, how will others learn,” Jasmine said.





Father’s Day takes on a new meaning when your child has died

Pictured: Daniel and his son Marcus, who died in 2013.

If there’s a piece of advice Daniel would pass onto all dads this Father’s Day, it’s to be present and to spend as much time with your kids as you can.

“You can always get more money, but you can’t get more time with your kids,” he says.

And the Dad of Marcus and Molly knows this first-hand. At aged two his son was diagnosed with Batten Disease, a rare and fatal disorder of the nervous system.

It was a diagnosis that understandably devastated him and his wife.

“The grief started the instant we were told. When you get a diagnosis like that, it’s the loss of the future you thought you had with your child, it’s the loss of what you’d planned. You’re left with many unanswered questions, like, what would his favourite movie had been, would he have gotten married, what career would he have chosen,” Daniel said.

Daniel says following the diagnosis, and knowing what the disease does to little bodies, meant giving Marcus a quality of life was his priority.

“Kids with this disease tend to get worse and worse, they end up in constant pain and they can’t do anything. I didn’t want that for Marcus. I wanted him to be the happy, cheeky little boy he was for as long as he could,” Daniel said.

Marcus died in 2013 at six years of age, and Daniel says the impact and process that follows is completely unique to each person.

“I guess I took on the typical male role of pushing all my feelings down. I was drinking too much to the point where I realised, I can’t keep doing this. For the longest time, I was just numb, and it takes a lot of willpower to come out of that, which is why I turned to running and entered the Very Special Kids Treadmill Challenge. Running is a completely mindless activity that focusses on breathing, and it helps me switch my brain off,” Daniel said.

Since Marcus died, he’s noticed certain patterns of behaviour towards childhood death that he’d like to see changed.

“The most common thing people say is, you’re so brave. And that one really annoys me because I’m not brave. When you’re in this situation you don’t get a choice, but you do anything for your child. Anyone can do it, that’s what parents do, even when you’re breaking inside,” he said.

Daniel points out it’s also what people say to comfort him that often isn’t helpful either.

“When Marcus died, a lady told me he’s gone to a better place. I appreciate the intention behind that, but it’s not helpful because I’d rather he was here with us. My advice to anyone struggling with what to say in those times is just to be present, use his name, say it sucks and just say I’m here for you,” Daniel said.

September 4 is the anniversary of Marcus’ death, which is closely followed by Father’s Day. Daniel says the lead-up to these days are tough, but it’s also the time of year where he just takes time out for himself and does what he needs to do.

“I find myself not following my own advice at this time of year by throwing myself into work. I find the build-up to these days harder than the actual day; the anticipation is actually worse. Each year I just play it by ear, but Father’s Day is definitely a day I take for myself and do what I need to do,” Daniel said.

“It’s not normal to bury your child in Australian society, and I know it’s a tough topic for many to talk about it, but we do need to start normalising the conversation,” he added.

Daniel is a member of Very Special Kids Family Advisory Committee, a committee that ensures those who we support are at the heart of what we do, and he also utilises our family support services.