Monthly Archives: March 2019

Greater support by rebuilding Very Special Kids Hospice

A life-changing upgrade to provide greater services, greater support and greater security well into the future.

To ensure we can continue to provide the highest level of care and support for children with life-threatening conditions and their families now and into the future, Very Special Kids has decided to rebuild and grow our children’s hospice. The need for support, respite and end-of-life care has never been greater.

Thanks to a significant $7.5 million Commonwealth grant from the Federal Government, we are in a position to make our vision become a reality by providing better support to children with complex medical needs well into the future.

The grant will help build a world-class hospice with state-of-the-art and best practice clinical facilities to better support children of every age, size, nationality and functional capability. The facility will offer more specialised services for children as well as a semi-private space for adolescents to better service their maturity and desire for independence.

As the number of families accessing the hospice for end-of-life care increases, their needs will be met by expanding the private area for end-of-life care, both pre and post death. It will allow for greater privacy, respecting a family’s final wishes for their child.

As part of the project scope, we are currently reviewing and researching the interim model of care for children and families we support during the project rebuild. The project is not expected to begin until late 2020 and our number one priority will always be to ensure children and families receive the support they need.

Without significant funding from the Federal Government, this project could never happen, as well as the generous ongoing support of Chain Reaction Challenge Foundation, new partner Victoria Racing Club and our community of loyal supporters who help us make an impact year after year.

We are grateful to be in a position where we can evaluate and improve our services, and this project represents the single most important service improvement in the entire history of the hospice.  It will have a significant and long term impact on the future of Very Special Kids.

Although this generous government funding has secured the first phase of the hospice redevelopment, our focus continues to be on how we can support the children and families currently in our care.

Over the past 23 years, these moments have been made:

  • Provided specialist medical care and symptom management to thousands of children with complex care needs and terminal illnesses.
  • In our first year of the hospice we had less than 40 families access the facility. Today we care for over 900 families.
  • Grow our team to 56 hospice volunteers, 27 nurses, 20 personal care workers, 4 on-call doctors and 1 Chief Medical Officer
  • Thousands of one on one and group art and music therapy sessions, creating joy, special memories and priceless keepsakes

Our hope for the future of the hospice:

  • Introduce new medical technologies and improve the level of clinical care
  • Provide discreet adolescent spaces to better accommodate their maturity
  • Better support children with behavioural complexities
  • Enhance end-of-life care to respect families final wishes
  • Increasing therapies provided to children during their stay
  • Ensure the hospice is fit for purpose for the next 20 years

We are thankful to all of our supporters in helping grow the hospice and allowing us to make a significant investment towards the future of Very Special Kids, enabling more support for families and their children.


An interview with Sister Margaret Noone on International Women’s Day

Sister Margaret Noone is a Loreto Sister, former teacher and junior school principal, and the first employee of Very Special Kids.

Following a 20 year career as a teacher, with many years as a junior school principal, Sister Margaret was presented with the opportunity to study Theology at Berkeley, which led to volunteering and working with children affected by life-threatening conditions. These experiences spurred Margaret’s passion to work with children living with life-threatening conditions.

Upon returning to Australia, in 1985 Margaret met two families whose children had died from cancer. They founded Very Special Kids in the hopes of providing the support they felt was lacking when their children were dying. Margaret was presented with the opportunity to establish Very Special Kids and continue her work in supporting children and families in need.

As the organisation grew and having seen first-hand the need for specialised palliative care for children in Australia, Margaret set out to build a home-away-from-home for children, both for respite and end-of-life care. The Very Special Kids Hospice, established by Margaret in 1996, was the first paediatric hospice opened in Australia and remains the only children’s hospice in Victoria.

Margaret’s advocacy for paediatric palliative care has seen her travel the world to visit other children’s hospices, become a member of the first committee for the Palliative Care Association of Australia, and present at and attend a number of conferences worldwide.

Recognised in 2000 with a Member of the Order of Australia award, Margaret led Very Special Kids until her retirement and still remains very active in her role as Patron. The organisation, now supporting more than 900 families would not be what it is today without Margaret.

Growing up, what kind of career did you want to pursue?

When I was younger, women had more limited career choices than they do now, and honestly I hadn’t given much thought to what a career might look like. I was busy enjoying life but in the back of my mind there was always the feeling I needed to do more, and to follow a calling. That led me to joining the Loreto Sisters. It was a hard choice to make, thinking of all I would have to give up, and even harder when I got there. I knew I had a passion for caring for others, and wanted to benefit the lives of others.

Who inspires you?

My father showed me the importance of reaching out to those less fortunate. He was a dentist in Sydney and did a lot of honourary work for people who couldn’t afford dental care. He also started a group of dentists providing free dental care to a home for boys with intellectual disabilities. Through watching him care for others, I knew I wanted to do the same in my life.

Who (apart from you) is most surprised by your achievements?

In the early days of Very Special Kids, there was some opposition in the medical fraternity to the type of services we wanted to provide. Initially it was difficult for them to see the need for support that was additional, and not always medical, to what was provided by hospitals. But Very Special Kids has grown and continues to grow, not because I or anyone else has pushed it, but because families have requested and need this type of support.

Now as there’s more understanding of the effects on the whole family and their community, when a child has a life-threatening condition. There’s also more acceptance of the profound impact support services like Very Special Kids can have.

How have women helped shape your success to date?

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 met her many times at palliative care conferences and was inspired by her persistence, insistence and determination to make tracks in a field never before explored. Elizabeth Kiubler Ross is another who became a good friend, a woman famous for putting the humanity back into dying. At many times in her career she was faced by naysayers and looked them in the eye and continued on anyway.

What qualities do you most admire in a female colleague?

The ability to show deep compassion. At Very Special Kids the family support practitioners and hospice carers and nurses could not do the work they do without a deep compassion and understanding for the children and families. It’s what propels them forward in their work, and enables them to be just what these families are looking for in their time of need.

What’s the key to successfully balancing work and life?

Honestly, I have not been very good with balance in the past. If you’ve got a passion, time doesn’t come into it, you just do what needs to be done regardless of your own needs. When Very Special Kids started, it needed someone who was able to dedicate an immense amount of time and energy. Being a Loreto Sister I was in a unique position to give my time wholly to getting it off the ground. That work of course continued. I’m taking a break now in my retirement.

If you had an afternoon to yourself, how would you spend it?

I get a few more afternoons to myself now, and love theatre, films and reading. Sometimes I even manage an afternoon nap.

Who do you regard as your mentor?

I have a few friends who have dedicated themselves to a cause they believe in, and have at the same time been an inspiration to me and a great support. They know who they are and how thankful I am to them.

What personal attributes have you used to overcome adversity in your life?

My faith has been an ever-present foundation enabling me to reach beyond what I think I can achieve alone.

If you could make one change to women’s lives, what would it be and why?

For women to be treated as equals in relationships and in professions. I started my career in the 1950s and the state of affairs for women at that time was restrictive. I had the fortune of growing up in a family home where I was treated no different from my brothers. However, that was an exception rather than the rule. At that time women often accepted things as they were as they could see no alternative. It saddens me now when I see great work hindered by the same attitudes towards women that existed at that time.

What is the hardest part of your job?

The hardest part of my job is watching the suffering of families who have dying children.

What advice would you give to someone aspiring to success in your field?

To show love, compassion and be ready to persevere in the face of adversity. And never think you’re too old or experienced to learn, and often from those much younger than yourself.

Pin & Win Charity Partner

In partnership with Victoria Racing Club (VRC) and the Melbourne Cup Carnival, Very Special Kids is proud to be the Pin & Win charity partner for 2019.

Pin & Win is the VRC’s flagship annual charity fundraiser and all sales of the Lexus Melbourne Cup souvenir pins will go to Very Special Kids supporting the upgrade of our children’s hospice.

Very Special Kids CEO Michael Wasley says “Very Special Kids is extremely proud to partner with the VRC. The current hospice is over 23 years old and requires an upgrade so we can stay up-to-date with the best clinical and support enhancements. By purchasing a pin, you are helping to support this upgrade to ensure our hospice continues to care for children and support their families well into the future.”

The Kiefer family are just one of the families that will benefit from the hospice upgrade.

11-year-old Alannah Kiefer suffers from an undiagnosed genetic syndrome and Developmental Epileptic Encephalopathy which is a refractory epilepsy. Because of her condition Alannah requires 24-hour care for all her medical and personal needs.

Parents Caroline and Chris Kiefer access respite through Very Special Kids Hospice several times a year to help them cope.

“Having a child with such high care needs can be exhausting. This time allows us some extended rest periods and an opportunity to do things with our son that are otherwise difficult. We are able to relax, knowing that Alannah is being cared for by experienced nurses and having fun.”

VRC Chief Executive Officer Neil Wilson said “the VRC is proud to partner with Very Special Kids for the first time and we encourage everyone who enjoys the Melbourne Cup Carnival to purchase a pin to support this charity and its important work caring for children with life-threatening conditions and their families.”

Upgrading the hospice will have a significant and long term impact on the future of Very Special Kids as it will allow for greater services, greater support and greater security in providing families the best care possible.

The Pin & Win campaign will commence in early September, with pins available at Flemington and a range of retail outlets.

More information on Pin & Win