Monthly Archives: March 2022

A family is sitting on the sofa at home and smiling at the camera.

Remembering Aria

After a long battle with IVF, Louise and Raymond were elated to introduce newborn twins, Axel and Aria to their growing family. Their eldest daughter Charli was a doting big sister to her two younger siblings, and the family quickly settled into their new normal.  

However, at nine months old, warning signs began to appear when Aria wasn’t gaining weight and refused to take her bottle. Doctors undertook an MRI, and Louise and Raymond’s little girl was diagnosed with Vanishing White Matter Disease, a rare and fatal form of Leukodystrophy. 

Just months later, the family were rocked with more bad news, Aria’s twin brother Axel was diagnosed with another genetic disease, IQSEC2, for which he requires 24-hour care. 

Aria&Axel“It was a kick in the guts,” says Louise. “We couldn’t believe we were facing another rare genetic disease. It wasn’t terminal like Aria’s, but still had its own challenges. It felt like we just had one blow after another.”  

It was at this point; the family were referred to Very Special Kids for emotional and clinical support. With the assistance of TLC Ambulance, Very Special Kids was able to curate a family trip to Melbourne Zoo, a lasting positive memory for Louise and her family.  

“Being told that Aria didn’t have long, we weren’t really strong in ourselves to leave the house without anyone with us. We made a day trip to the zoo, which is one of the things we were wanting to do with the kids when they were born,” she says. 

“We were greatly appreciative they made that happen and that we got to have that experience as a family.” 

Aria sadly died in May 2021, at 19-months-old. Reflecting on her last moments with her daughter, Louise shares, Aria was a fighter and fought to the very end. She was just so happy and so loved. She was always the cheeky one, and her spirit is alive in everything that we do. She is always here with us.” 

Their family Support Practitioner, Angela, continued to provide emotional support to the family, helping them navigate their grief, and cope with looking after Axel during this difficult time. 

Louise shares, “Very Special Kids has been a godsend. Angela has not only helped with Aria but has continued to support us through Axel’s journey. She has assisted me in so many areas, from preparing her funeral, to navigating school options for Axel, and helping with teachers at Charli’s school. It’s amazing how her care has extended to the whole family.” 

Charlie,Axel&AriaTheir seven-year-old daughter Charli also takes part in Very Special Kids’ online sibling support group, once a month.  

Louise shares, “Charli seems to step out of her comfort zone a bit more, because she knows that the other kids are going through something similar to her. She has also taken part in the music therapy program. Which has helped her process her emotions and express herself a bit more.” 

After Aria’s death, Louise, and her sister Rebecca wanted to find a way they could honour Aria’s memory. “We had drawers, and drawers full of clothing, and I knew that it wouldn’t be possible to keep all of this stuff. So, my sister and I decided to start sewing her clothes to turn them into something sentimental. Now I have blankets, toys for her brother Axel and sister Charli, so Aria is always close to them.  

“Charli gets so much joy out of having a keepsake to remember Aria by. It gives her something to hold onto. Something she can play with, cuddle with, and provide that extra comfort of knowing that it’s her sister’s clothing.” 

After gifting keepsakes to family members, Louise and Rebecca recognised, that they might be able to help other families who are going through a similar journey, so their business, Hold Me Forever was born.   

Louise explains, “I’ve found it’s very therapeutic sewing her clothes and I also love that I may be able to help someone else who is in a similar situation. I understand what the grief is like, and I know the comfort that I get from it. We love to help others feel close to their loved one and give them a bit of closure, because I know how tough it can be.” 

The family also honour Aria and Axel’s birthday each year by giving back and they have supported different charities, including Very Special Kids Giving Day last year. “Since we received Aria’s and Axel’s diagnosis, Ray and I have been on a mission to raise awareness for these rare conditions. Hoping it can help other families going through what we’ve been through.”  

When asked what advice she would like to offer, other families who are on a similar journey, Louise said, “I want other families to know, they are not alone. To keep your family close and reach out to people who are going through the same thing as you. If anyone wants to talk, I’m always here, I’m happy to be a shoulder to cry on, share a story or help in any way. If you’ve got any questions, we’re more than happy to help out, and just give back support.” 

Changing with the seasons

Very Special Kids ‘Seasonal Connections’ program acknowledges the seasonal nature of grief and how family’s individual experiences can change over time. It is a quarterly bereaved family event, which invites Very Special Kids families to participate in a therapeutic bonding activity in memory of their child or sibling.  

To mark the end of summer, the first event was held on Sunday 27 February, families worked together to create immersive artwork using their hands and fingerprints. They also created wind twirls which were hung on the trees to catch in the breeze, creating beautiful art on the lawns of Very Special Kids. 

Seasonal Connections brings bereaved families together four times a year to celebrate the changing seasons. At each event, families can sit on the Very Special Kids bench and capture the season in a portrait with their family. As seasons pass, new portraits and artwork will be created, providing a tangible representation of their growth and change over the season. 

This Very Special Kids program was adapted from a program developed by the Child and Family Bereavement Service in Cardiff, UK (Hillock, Feeney & Rhinehart, 2017). Seasonal Connections aims to expand the Cardiff program’s design to be family-focused, rather than aimed only at siblings. It will allow families to remember and reflect on their grief across changing seasons, while also connecting with other families who understand what it is like. The program acknowledges the seasonal nature of grief and family lifespan changes over time, including unique significant events for each family. 

Bereaved families can join together, share their stories, enjoy an afternoon picnic, play some games and create some beautiful works of art together.  

Very Special Kids welcome bereaved families to join us on 1 May for the golden warmth of the next Seasonal Connection – celebrating autumn.  For more information please contact Bernadette (bmcgregor@vsk.org.au), Edwina (ehargreaves@vsk.org.au) or Mei (mgoh@vsk.org.au).

Tips to help a grieving loved one

Facing childhood illness and death is an overwhelming and traumatic experience, and everyone in the family and wider community can struggle to find their place in the process of grief and loss.

In honour of World Social Work Day on 15 March, Family Support Practitioner, Edwina Hargreaves, has shared some important tips and advice, so the communities surrounding bereaved families can better connect and support their loved ones.

Although dealing with the loss of a child is a very personal process for each parent, the following seven tips are practical ways in which family and friends can provide support during this difficult time.

Get cleaning
Do some of their housework such as cleaning, washing or gardening. If your friend belongs to a community or school group, it may be useful to create a roster for those people who want to help out. If your friend is not comfortable with this, a simple visit to their home to observe and undertake daily tasks or jobs can make a big difference.

Answer their phone
Many parents of sick children find it overwhelming to respond to phone calls and repeatedly tell their story. It can be incredibly helpful to have someone who coordinates the sharing of updates and information (often via social media) and who can take the phone calls for them.

It is also important to check in on your friend with a text message, and don’t stop when you get no response. Even if they don’t respond, they notice and it can make a huge difference to their sense of being supported.

Start cooking
Bring over pre-cooked meals which just require reheating. Or send a text to your friend saying, “I am picking up dinner, can I pick up dinner for you too?”

Offer to drive
Takeover or support daily duties, like collecting children from school and taking them to their after-school activities, often siblings can miss out on these because their parents are overwhelmed and find it difficult to manage.

Another offer which can be appreciated is the offer to drive the family to hospital visits, particularly if one parent is still trying to work.

Be understanding
Remember that your role is to alleviate the family’s stress. They may not want these practical supports and it’s important that we are respectful of this (and do not take it personally). Navigating grief is a very personal process for each person, so their needs may vary. It is important to listen and respect.

Sending care packages
Fill a bag with DVDs for the other children, books, magazines, and personal care items. This is a way to show you are thinking of the family when you’re not able to physically be present.

Never stop the invitations
Include parents in everyday activities, even when you know that they will not be able to participate. Parents often feel disconnected from their friends, so always offer to meet for a coffee, go for a walk or go to the movies.

Very Special Kids engages with the community, to improve conversations around illness, grief and death, and lead our society to become a more supportive and knowledgeable place for families who are suffering through the death of a child or young person.

Very Special Kids provides specialist palliative care for children and young people with life-limiting conditions, and tailored support for their families – through life, death and bereavement. Our integrated approach includes emotional, clinical and practical support to improve quality of life and create positive, lasting memories. Learn more about our services here.

International Women’s Day

For International Women’s Day, we would like to acknowledge all the remarkable women who have offered guidance, leadership and support to Very Special Kids.  

Our Patron, Sister Margaret Noone AM established the organisation on a foundation of love, compassion and empathy. Her dedication and commitment to supporting Victorian families facing childhood illness has inspired generations of Very Special Kids employees, volunteers and donors. 

Sister Margaret and our female leaders reflect on their work with Very Special Kids and what the organisation means to them. They impart advice, observations and understandings of what they have learnt as leaders in the not-for-profit space.     

Sister Margaret is standing in the children's hospice smiling at the camera. There are nurses and children in the background.“Show love, compassion and be ready to persevere in the face of adversity. I have been influenced by many women around the world, for example, Dame Cicely Saunders, a doctor who first introduced the concept of hospice care by starting St Christopher’s Hospice in London. I  was inspired by her persistence, insistence and determination.” 

Sister Margaret Noone AM, Very Special Kids patron 

Bronwyn is standing indoors at a hospital, she is smiling at the camera“It has been an incredibly rewarding 20 years working with Very Special Kids. Over this time, I have been privileged to see first-hand perspectives of children, families, volunteers, family support practitioners, nurses, allied health staff, doctors, and management within the organisation. I have watched Very Special Kids grow and I have grown with it, both personally and professionally.”   

Dr Bronwyn Sacks, Chief Medical Officer 

 

Kirsty is standing outdoors in front of green bushes and trees, she is wearing a Very Special Kids t-shirt and is smiling at the camera“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.”   

Kirsty Blair, Hospice Manager 

 

 

Marcia Christmas - supplied“When I was a teen, my best friend was in a near fatal car accident. She acquired a serious brain injury that caused a range of complex conditions & limited her life expectancy.  There were no organisations like Very Special Kids available to Sally and her family.

I’m inspired every day by Sally’s strength and resilience and I’m proud that my role at Very Special Kids allows me to play a small part in helping children and other young people like her, by improving their quality of life and creating happy, lasting memories for their families.”

Marcia Christmas, General Manager, Fundraising and Marketing

 

Sharon Stynes“I am blessed to be working for an organisation like Very Special Kids.

To be able to do what I love organising events and making a small difference to the children and families that Very Special Kids support is so rewarding.”  

Sharon Stynes, Fundraising and Events Manager 

 

jostanton“I am very fortunate to have had a peek into Very Special Kids in my six-month contract period, and I am impressed and touched by meeting our women who are smart, ambitious, expert, diligent, courageous, warm and sincere. 

I like to nurture a glass half full mindset and encourage others to take a minute to reflect on what’s their essence of being an Australian woman in 2022.”  

Jo Stanton, General Manager, People and Culture 

 

Angie Dredge_supplied

“Since commencing at Very Special Kids in early 2021 my role has been varied…Identification of areas of innovation and improvement, in line with the National Standards, is a constant focus to ensure that services we provide are responsive to the individual child and family’s needs.”  

Angie Dredge, General Manager Service Delivery and Improvement  

 

JessicaBirnbaumAt 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…

I have been given the opportunity to continuously learn, grow and evolve, both professionally and personally.”  

Jessica Birnbaum, Family Support Manager 

 

Jane Baker“For me Very Special Kids is all about the people. The children and young people that use our services, and their families, take my breath away with their resilience, courage and determination. I love the fact that all the people that work here, paid or unpaid, are here for the same reason.  It’s such a privilege to play my part.” 

Jane Baker, People Operations and Office Manager 

 

International Women’s Day offers us the chance to reflect and acknowledge the incredible strides and achievements women have made throughout history. We thank all the incredible people who have supported Very Special Kids, from inception to present. Your contribution has helped generations of Victorian families to receive much-needed care during the most difficult times.  

Michael Wasley and Ben Griffiths are outside on the site where the new home will be built.

A Very Special Home

Award winning new home builder, Henley Homes are well entrenched in many communities across Victoria, and so too is their dedication to making a difference in these communities. This year, Henley Homes will help build a better quality of life for sick children and their families by building and selling a stunning double storey home to raise much-needed funds for Very Special Kids.  

Construction of one of Henley’s most popular home designs, the Ashbury 30, commenced yesterday at The Dales, Bonnie Brook; an exclusive Henley community in Melbourne’s outer west, just 10 minutes from Caroline Springs.  

Ben Griffiths, General Manager of Henley’s completed homes division said, “We are very proud to be in a position to assist Very Special Kids raise funds to rebuild their hospice. The work they do makes a big difference to a lot of Victorian families. Our aim with the building and auction of this double storey home is to ensure Very Special Kids has the resources to continue the care and support for children and young people with life-limiting conditions and their families.”  

A group of Henley Homes and Very Special Kids team members are standing outside where the new home will be built

One lucky buyer will get to enjoy a beautiful home and the serenity of living in Bonnie Brook. Only 10 minutes from Caroline Springs, The Dales will feature beautifully manicured landscaping with all the amenities you need close by including, schools, shops, medical facilities, freeways and train stations,” added Ben.  

Michael Wasley, Chief Executive Officer of Very Special Kids said, “We are thrilled to be working with Henley Homes on this exciting new partnership. Their incredible generosity will help future proof the operations of our new world-class hospice which is set for completion in early 2023.  

“Corporate partnerships like these play such an important role in ensuring that we can continue to provide specialist palliative care to improve the lives of many children and young people, and their families well into the future,” Michael said.  

Image of new Henley Homes houseThe double storey 30-square home boasting Henley’s popular Novello façade includes four-bedrooms all with walk in robes, four living areas and an expansive master suite with an oversized dressing room.  

The home will be appointed with luxury fittings and fixtures, and finished with professional landscaping, decking, ducted heating and window coverings – everything a buyer needs to move straight in.  

It will hit the market in early November with all proceeds from the auction going to Very Special Kids. 

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.

Image of Helena, sitting outside with trees in the background. She is smiling at the camera.

World Music Therapy Day

To honour the vital role music therapy plays at Very Special Kids, our Registered Music Therapist and Zoom Room facilitator, Helena has shared the important role music plays and how we can use World Music Therapy Day as a reminder to appreciate music and it’s healing powers.    

The importance of World Music Therapy Day 

World Music Therapy Day provides us with an opportunity to reflect on the healing power of music and how we use music to enhance our wellbeing. Music has been used for thousands of years across many cultures to foster healing, connection and community, and music therapy draws on these fundamental aspects to support people in their daily lives.  

Music therapists are trained to use music to support the physical, cognitive, emotional and social needs of people of all ages and abilities. Music therapy helps create a safe space for processing some of the challenges we face. Through creating and sharing music, we aim to foster trust and connection with others, promoting a sense of belonging and community.  

A nurse is helping a young boy play maracas and drums. He is smiling and enjoying himself.

Jett loves music therapy with the hospice team.

The versatile nature of music and the differing ways in which people connect with music makes my role quite unique, in that I can therapeutically adapt musical interventions to meet different needs. Within a single day at Very Special Kids, I can collaborate and co-facilitate a music session with Leo (Occupational Therapist) and Belinda (Physiotherapist), focussing on physical needs such as trunk control and reaching forward, making choices and communicating with them, and of course having fun. Within the same day, I might also facilitate a music session for a family where I’m cultivating a safe space for parents and siblings to process grief and loss. Using music as a support tool that is motivating for engagement and emotionally meaningful is very special to my role. 

World Music Therapy Day is also an opportunity to look at how we use music currently, and perhaps how we can use it more intentionally in our daily lives to support our own wellbeing. Whether it’s singing your favourite song in the car or having impromptu jam sessions using homemade instruments with your children, music is a resource that anyone can benefit from. Music provides us with an avenue to communicate and express our feelings in ways that extend beyond words and can take us on a journey, allowing us to explore and experience different emotions. It provides comfort in times of need, it motivates us to move and dance, and it provides relief from the chaos of the outside world.  

The next time you listen to music, consider being more present and allow yourself to be purposefully engaged in the experience and how it feels. There’s no right or wrong way to do it and participating in music doesn’t require specific skills or knowledge to feel the benefits. There are many different ways to engage with music and it is a powerful tool that can positively impact our lives. 

Thank you to the Campbell Foundation, whose generous support allows Helena to bring the joy of music to the children, young people and families in our care.