Monthly Archives: December 2021

The Power of Zoom Room

In 2020, our Zoom Room was created as a means to continue providing support for children and families when COVID-19 restrictions impacted the provision of face-to-face support in the hospice. Two years later, the Zoom Room program has flourished, becoming an effective platform for children, families, staff and volunteers to connect through an online session of music, stories and activities.  

In 2021, this program was facilitated by Helena, our Music Therapist and Leo, our Occupational Therapist. The Zoom Room has been running every Wednesdays since 6 October 2020. As the weeks go by, it has been wonderful to welcome some familiar faces each week and provide an opportunity for   children and families to join from regional areas.  

Music therapy is a research-based health care service that utilises music to actively support people with their health, functioning, and wellbeing. Registered Music Therapist and Zoom Room facilitator, Helena explains the important role music can play in a child’s therapy.   

“Music enhances non-verbal and verbal communication, provides comfort, relieves distress, and provides opportunities for choice and control. A child’s wellbeing and quality of life can be enhanced as music can foster joy and happiness and music can also be adapted to support families to create a musical legacy of their child within end-of-life care.”  

Some of the children and families have not previously been to the hospice, and the Zoom Room has been an enjoyable opportunity for children and adolescents to get to know and build rapport with our volunteers, hospice and Allied Health teams.  

The Zoom Room offers a chance for children and families to connect with the broader Very Special Kids community, and our trained volunteers play a significant role in this. During each session, a volunteer will share an activity to encourage creativity and further strengthen the bond between children and our expert team.
  

The Zoom Room has also been an opportunity to welcome some special guests, and we were delighted to have 66 families attend when Delta Goodrem joined Zoom Room in September this year.  

Occupational Therapist and Zoom Room facilitator Leo shares, “it was amazing to have Delta join our Zoom Room, the kids absolutely loved it! It was incredible to see everyone moving, singing, dancing and participating. We had some great feedback.”  

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To finish the year on a ‘high note,’ the last Zoom Room session of the year was attended by another very special guest, all the way from the North Pole.

Santa joined to spread some Christmas cheer, read stories, and sing some Christmas carols. 

 

As Zoom Room has continued, our Allied Health team have seen the connections build between children, families and staff and witnessed greater participation and sharing throughout the sessions.  

We are excited for what is in store as Zoom Room continues in 2021!

A volunteer’s reflection on 14 years with Very Special Kids

The Very Special Kids team is sad to say goodbye to one of our superstar and highly skilled family service volunteers, Sue Clifford, who has volunteered with Very Special Kids for over 14 years.  

Sue is taking the plunge and moving to Western Australia via Queensland. Before she left, she sat down with us to share some of her favourite memories volunteering in the children’s hospice and working as a family service volunteer in Ballarat over the past two decades.   

SueClifford_Mother“In 2006, I did exactly what I’m doing now. I put my belongings into my car in Tasmania, jumped on the boat and moved to Victoria. Everything felt new, and I didn’t know too many people, so when I heard about Very Special Kids, I was excited to get involved,” says Sue.  

Sue has always found herself gravitating towards supporting children and adults with disabilities, “My aunt had a disability, and I used to spend a lot of time in her self-help workshop growing up, as well as attending functions with my grandmother.

When my children started primary school in Tasmania, I was recruited as a teacher aide, and supported a couple of children with fairly significant needs.  

“I remember one of the teachers at the school asking me, what do you get out of this? Why do you enjoy doing this? And I said, if I can just get one smile, or a little laugh, once in my shift, I know that I’ve done a good job. 

“The same thing goes at the Very Special Kids hospice. For some children, it can be really hard to get that little prompt and little response, but whether it be a squeeze of my hand or a little smile, that feedback from the child is priceless to me.” 

The volunteer program 

Very Special Kids has more than 750 dedicated volunteers who generously give their time to support families of children and young people with life-limiting conditions. Our regular training programs are developed to help volunteers to navigate difficult conversations, so they can better converse with families going through the most difficult times.  

“The training was extremely considered and a real eye-opening experience for me. I had been working in that industry for a little bit, but I still learnt a lot from the program,” says Sue. 

Every Family Services Volunteer completes a 27-hour training program to equip them with the skills and knowledge needed to support families who have a child or young person with a life-limiting condition. Sue explains, “As a volunteer, you’ve got to be prepared to navigate all those different pathways and be thinking on your feet the whole time because each child that comes in will be different. 

“I remember getting called in to look after a little girl in the hospice, while her parents had a meeting with the hospice team to discuss how they were going to do their end-of-life stage. Their daughter had a brain tumour, and was non-verbal, I remember thinking how daunting it must be for this child, to be with a stranger she had never met before. I took some magazines with me and I sat down beside her and introduced myself. I was told she had constant headaches, so asked if I could read her some stories from the magazine, or if she would prefer to just look at the pictures together. I asked her to squeeze my hand for the one she would prefer, and she squeezed tightly when I mentioned the pictures. So we enjoyed flicking through the magazine to look at the pictures.”  

Moving to regional Victoria 

Four years ago, Sue decided to move to Ballarat, she was disappointed that she would no longer be able to work at the children’s hospice in Malvern but was excited to learn that the Very Special Kids family support program was going to be opening in the Ballarat region. Pauline, our Ballarat Family Support Practitioner, introduced Sue to one of her families who required extra support.  

 “I jumped into it straight away, and it’s been such a lovely experience. The family has been really welcoming and I am going to miss them terribly. They just have such a big heart, and are always putting others first, despite how much stuff is going on in their own life,” says Sue.   

Sue shared that sometimes conversation with her family would lead to questions of what life will be like after their child dies. “It is extremely difficult when this inevitable outcome is looming ahead of you, and a lot of parents just want to talk about this in a safe space with others who can empathise. In addition, families want to make the most of every precious moment they can share with you and their child.” 

Supporting families as a volunteer can provide the extra support and respite a family needs to get through their day-to-day tasks, Sue shares how Very Special Kids helps. “Parents are often so busy caring for their children, they often don’t have time to do little things most people take for granted. Like taking their kids to the movies or an AFL game. Very Special Kids can allow that stuff to happen. The staff are always creating new opportunities for children that might not necessarily have had that opportunity to do otherwise.” 

Saying goodbye 

Reflecting on the past 14 years volunteering with Very Special Kids, Sue explained how much of an impact the staff has had on her experience over the years. 

“The staff at Very Special Kids and Sister Margaret Noone are really special. They really care about the work they are doing and are very passionate about supporting families through all stages of their journey.  It’s just an amazing organisation, and it gives you so much more than what you give back.” 

Team Very Special Kids take on the Melbourne Marathon

Last weekend, Team Very Special Kids hit the pavement determined to raise funds for children and families in our care. With 579 participants joining Team Very Special Kids as part of the Nike Melbourne Festival 43rd edition, together we raised nearly $70,000 which made us the third highest Associate Charity taking part at the event.

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Thanks to the amazing community support from our participants Very Special Kids can continue providing specialist palliative care, improving the quality of life for children, young people and their families. Teams and participants ranged from first time marathon runners to seasoned pros. 

Olivia Molly Rogers - medalVery Special Kids Community Ambassador and Former Miss Universe and Speech Pathologist, Olivia Molly Rogers, was one of the participants running for Very Special Kids – raising an incredible $7,542.15 as our top fundraiser.

Olivia shared, “I have seen first-hand the work they do. It is just an incredible cause, and I cannot think of a better one to support. Running a full marathon has been on my bucket list and I thought what better opportunity to support Very Special Kids and do it for an amazing cause!” 

ClaudiaVery Special Kids Community Ambassador and Foundation Committee member, Claudia Haeger crossed the finish line in under four hours after a gruelling 42.2km full marathon, raising over $3,000 for Very Special Kids – a phenomenal effort! 

Claudia shares, I’ve been a part of this initiative and advocate for Very Special Kids for four years. I believe that with kindness, hope and through the great efforts of Very Special Kids the world would be a better place. 

Another Community Ambassador participating in the half-marathon was Chris, who has a personal connection with Very Special Kids.  

Chris’s son Reggie died at age two in 2019 after being diagnosed with Infantile Onset Pompe disease. Reggie spent his last hours at the Very Special Kids hospice surrounded by family and our specialist team. The family access expert counselling and a range of support programs at Very Special Kids. They are supported by Very Special Kids Family Support Practitioner, Edwina Hargreaves, whose role is to support to the entire family at all stages of their journey.   

Chris has run in the Melbourne Marathon Festival since 2018 and has raised valuable funds for Very Special Kids, year on year. 

Chris said “Very Special Kids have been extremely important for us from the time of Reggie’s diagnosis through to the continued support we receive today. And running is important to me immediately after Reggie’s passing – it was a way of having some time with him. We will forever be indebted.”   

Property advisory group SEMZ were the top fundraising team for Very Special Kids, rallying their staff to raise a remarkable $7,283 for Very Special Kids.

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Our youngest supporters, Rupert and Banjo met on race day and completed the race together. Joined by their mother’s Geraldine and Emily, the four supported each other across the finish line.  

Rupert shares, “I decided to take on the challenge because it is a good cause, and my family has been fundraising for it since before I was born. It is a challenge, but it is a challenge that could help lives.” 

Funds raised will help us to continue delivering our expert services to more than 850 families across Victoria for the child and their whole family from initial diagnosis to end of life care, and bereavement – for as long as they need.  

In a year when many members of Team Very Special Kids have faced their own challenges, this is a phenomenal outcome, and on behalf of the children and families we support we are so grateful our dedicated and empathic supporters. 

Would you like to get involved in community activities and raise funds for Very Special Kids? Find out more here.  

Very Special Kids hospice rebuild project celebrated with sod turning ceremony

The Very Special Kids grounds were rife with excitement last Wednesday, as the turning of the sod ceremony marked a significant step toward the rebuild of our world-class children’s hospice. 

Special guests’ Federal Health Minster, The Hon. Greg Hunt MP, Parliamentary Secretary for Health, Mr Steve McGhie and Federal Member for Higgins, Dr Katie Allen MP joined our Founder and Patron, Sister Margaret Noone and CEO Michael Wasley to turn the first sod on the site.  

 

This special event marks a watershed moment in our history which will enhance the way we deliver specialist palliative care for children and young people and their families across Victoria well into the future. The new facility will allow us to expand our model of care and capabilities, providing greater access for all children and young people with complex needs and raise the bar in children’s respite and end-of-life care. 

191217_GBlue_Z7_9999_LgeThe event was attended by Very Special Kids family, Cory and Jayne Mitchell, their daughter Jemimah and son Elliott. 

The Mitchell family have been supported by Very Special Kids since 2019, their son Elliot requires around the clock care to manage his condition, Tracheobronchomalacia, which impacts his ability to breathe. 


“We booked into the hospice’s family accommodation for three nights and it was a lifeline. I was able to get a good night’s sleep for the first time in years, because I usually get up 5-10 times per night to Elliott, and just focus on my girls’ knowing Elliott was in the best care. I could check in on him when I wanted to, the staff just loved him, he was so happy – it was just phenomenal,” Jayne said.
 

Prior to the hospice rebuild, Elliott had another stay in the hospice giving Cory and Jayne a few nights away, as a couple. “I don’t know how families survive without the hospice, it is a lifesaver, a godsend. I’m excited about the rebuild because as Elliott grows, I know he will need different equipment and therapies so it’s wonderful, and comforting, to know we will have access to a modern facility,” Jayne said.  

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The hospice will fill a crucial gap in Victoria’s health system, providing 24/7 specialised paediatric palliative care for children and young people with life-limiting conditions.  

The new world-class facility entails best practice design features including:  

  • Eight individual large bedrooms with private ensuites 
  • Private end-of-life area to respect family’s final wishes 
  • Separate spaces for art and music therapy 
  • A multisensory and a multimedia room 
  • Soft play spaces and additional therapy spaces 
  • Discreet adolescent space to better accommodate their maturity.  
  • A hydrotherapy pool for pain management and physiotherapy, and an outdoor undercover play area. 

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Our children’s hospice was the first paediatric hospice in Australia and remains the only one in Victoria. The original hospice was built in 1996 and has provided 24/7 specialised care to thousands of children and young people. 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 supported to cope throughout their most difficult journey.  

The support from the Federal and State governments, local members of parliament, Capital Campaign Committee and major donors and funders across the community have made this momentous project possible, ensuring sick children, young people and their families have access to what will be one of the world’s best children’s hospices’ into the future. 

To learn more about the hospice rebuild project, click here.

VSK Sod Turning Ceremony Download Gallery

Help make it a Very Merry Christmas

Christmas is the season for giving, and there are many ways you can support Very Special Kids this festive season. Thank you to our wonderful community of supporters who are hosting fundraising activities this year!

Malvern Xmas Trees – SOLD OUT!

Malvern Xmas Trees are selling beautiful fresh Christmas trees again this year, and donating a portion of each sale to Very Special Kids. You can choose your own tree from the front lawn at Very Special Kids, 321 Glenferrie Road, Malvern or order online and arrange delivery here.

Malvern Xmas Trees is open every day until Thursday 23 December – 10am to 5pm on weekdays and 7am to 5pm on weekends.

Kuranjang Christmas Lights

The Greenland family invites you to their annual Christmas lights, in memory of Jonah who tragically died just 90 minutes after birth. The light show launches on Friday 10 December and will run until Monday 31 January, at 14 Melrome Court, Kuranjang.

This event has raised thousands for Very Special Kids and aims to add $3,000 to that tally in this year. For more information and to keep up to date with the event click here.

If you can’t make it to Kuranjang to see the lights, you can still support the Greenland’s amazing initiative by donating here.

CJ’s Christmas Village

This year CJ’s Christmas Village window display will be fundraising for Very Special Kids. The beautiful display is open until Sunday 26 December, until 10pm, at 6 Franklin Street, Moorabbin. You can follow them on Facebook here.

If you can’t make it to Moorabbin to check out the display, you can donate online to support CJ’s Christmas Village here.

Bunnings Altona Christmas Fete

This Thursday 9 December, Bunnings Altona is hosting its annual Christmas fete. Visit between 6pm and 8pm to enjoy some festive shopping – including toys, merchandise and a range of handmade craft items from the Very Special Kids stall.