Monthly Archives: March 2020

Important announcement: Keeping our community safe

Over the last week, we’ve been keeping a close eye on COVID-19, or Coronavirus, and what it means for our community.

We have not had any confirmed virus cases within the hospice, or among any staff.

But, to ensure we protect Victoria’s most vulnerable children, and their families, we are currently undertaking measures to protect the health and well-being of our children, families, staff and volunteers.

We have made the decision to cancel all respite bookings at the hospice from today until further notice.

The administration of Very Special Kids remains open, and our friendly team is still available to take your phone enquiries across all contact numbers.

We will continue to support families via telephone or video conferencing for the immediate future to reduce face-to-face contact.

All fundraising events and Family Support programs, including sibling days, scheduled over the next four weeks are postponed. All Family Services Volunteer shifts, including in the home, have also been suspended.

To reiterate, we have not had any confirmed or suspected cases here, these measures are precautionary to ensure we are responsible and are doing all we can to prevent the spread of the virus amongst our community.

We will continue to liaise with health and government advisors and review our position accordingly.

We will also continue to update you on future events and services as soon as new information develops or our position changes.

During this time, it’s important to keep updated with the right information. We recommend you visit the DHHS website at

The Royal Children’s Hospital also has great resources for keeping yourself, and your children, safe and well. Visit:

Lou gains professional volunteer leadership

 Lou Cooney’s face beams when she talks about the volunteers at Very Special Kids.

“I have never come across such a dedicated group of people. If I ever have a last-minute volunteer role become vacant, someone always puts their hand up to do it. They are a very dedicated group of people,” she says.

Lou is our Friends of Very Special Kids Volunteer Coordinator, a role that oversees the volunteers who support our events and fundraising.

After seven years in the role, and managing thousands of volunteers,  Lou has just become our first Volunteering Victoria Professional Leader of Volunteers, a 16-point Continuous Professional Development (CPD) program that improves volunteering sector knowledge, skills and future employability through accreditation.

Lou said she did the qualification so she could be the best she can for current, and future, volunteers.

“I just want to be the best I can be for them. They give up so much of their time, for free, and this qualification has made me more knowledgeable and trusted,” she says.

Just over 50 volunteer coordinators gained the Professional Leader of Volunteer certificate this year.

Participants must complete modules around professional development, events and services offered by Volunteering Victoria. They must complete the reading of relevant industry articles/newsletters, mentor colleagues/members in volunteering management, and provide a reflective practice report.


Inspiring Women: Sister Margaret Noone, Patron of Very Special Kids

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.