Monthly Archives: September 2015

A much-needed break for the Macfarlaine’s

15-year-old Alexander Macfarlaine from Mt Eliza loves the sunshine, walks around the peninsula and school. He also loves his family, parents Helen and Kevin and sister Evalouise (8).

Alexander was diagnosed with cerebral palsy, epilepsy and an intellectual disability before his first birthday.

“There is no cure for his condition so it’s a life-long responsibility to care for his every need,” says Helen.

Helen and Kevin approach caring for his complex needs as a team effort, but know it’s important for them to take a break and do some of the things other families would take for granted.

“Going to work, the gym, on holiday or socialising with friends and family, helps us engage with the normal world and have a break from caring,” says Helen.

Alexander’s visits to Very Special Kids Hospice have enabled his family to take much needed holidays.

“Having holidays away from Alexander allows us to have a good rest, confident he is well looked after,” says Helen.

“We have come back from holidays rested, refreshed and re-energised, helping us to continue to look after him.”

Helen and Kevin are grateful for the invaluable support Very Special Kids provides not only to their family, but to other families caring for children with needs like Alexander’s.

“We hope Very Special Kids is always able to provide its services to families caring for children with high needs,” says Helen.

Very Special Kids supports 223 families in the Southern region of Melbourne, and 900 across Victoria, that are caring for children with life-threatening conditions, by providing 24-hour nursing care at Very Special Kids Hospice and family support services.

A Family Support Worker in Hastings provides emotional and practical support and organises group therapy programs for families in Mornington and Southern parts of Melbourne.

It costs $7 million per year to operate Very Special Kids, with all services free-of-charge to families. Please help us continue to support children like Alexander, and their families, by donating to the Very Special Kids Piggy Bank Appeal.

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Team Very Special Kids off to the races

Eight Spring Racing Carnival jockeys and trainers have chosen Very Special Kids to be their charity in the Spring Racing Carnival Premierships.

While competing for group titles and prize money at the 12 premier racedays, the jockeys and trainers will also be competing to win donations for Very Special Kids, with a pool of $80,000 up for grabs.

The jockey and trainer who accumulate the most points across the Premierships will win $25,000 each for their nominated charity. In addition, the jockey and trainer who accumulate the most points on a raceday will receive a $1,000 donation for their charity, which will double to $2,000 on the final day of the Premierships.

Team Very Special Kids is made up of jockeys Brenton Avdulla, James Winks and Tommy Berry and trainers James Cummings, Jo Pride, John O’Shea (Godolphin Racing), John Sargeant and Wayne, Michael and John Hawkes (Hawkes Racing).

The Spring Racing Carnival Premierships get off and running tomorrow with Hyland Race Colours Underwood Stakes Day at Caulfield. Keep an eye out for Team Very Special Kids on these racedays:

  1. Hyland Race Colours Underwood Stakes Day Caulfield – Saturday 26 September, 2015
  2. City Jeep Moir Stakes Night Moonee Valley – Friday, 2 October 2015
  3. Turnbull Stakes Day, presented by Yellowglen – Flemington – Sunday, 4 October, 2015
  4. BECK Caulfield Guineas Day Caulfield – Saturday, 10 October, 2015
  5. BMW Caulfield Cup Day Caulfield – Saturday, 17 October 2015
  6. William Hill Manikato Stakes Night Moonee Valley – Friday, 23 October 2015
  7. William Hill Cox Plate Day Moonee Valley – Saturday, 24 October 2015
  8. AAMI Victoria Derby Day Flemington – Saturday, 31 October 2015
  9. Emirates Melbourne Cup Day Flemington – Tuesday, 3 November 2015
  10. Crown Oaks Day Flemington – Thursday, 5 November 2015
  11. Emirates Stakes Day Flemington – Saturday, 7 November 2015
  12. Sandown Spring Carnival Day, William Hill Park – Saturday, 14 November 2015

Meet Dawn McKenzie – Very Special Kids volunteer

80-year-old Dawn McKenzie has been volunteering with Very Special Kids for 20 years, and she’s still going strong.

Dawn first discovered Very Special Kids in 1995 when an advertisement calling for volunteers in her local community newspaper caught her eye.

“I went along to a meeting, did the volunteer training course and it’s been the best thing I ever did,” she said.

As a Family Support Volunteer, Dawn has directly helped four families by providing regular love and support to the child with a life-threatening condition and their family. She says while each family is different, it is all about providing support for the whole family unit.

“My first family I was looking after the father as well, taking him to Monash Medical and I would also take one of the siblings to the movies and work with the child that was non-verbal.”

But more often than not Dawn was there to provide companionship and emotional support for the parents of the sick child or provide respite care. She has been linked with her current family for six years now and continues to provide a tremendous amount of support for them.

“I feel honoured to be part of Very Special Kids, I really do. It’s the best thing I’ve ever done in my life besides have my family,” she said.

In 1997 when the Piggy Bank Appeal began, she joined the Piggy Trails. Since then she has participated in metro and regional trails across Victoria.

Dawn is keen to support Very Special Kids in any way she can and enjoys fundraising by organising movie nights and dinners. Through these events Dawn has raised $105,111 to support the vital work of Very Special Kids.

With an altruistic and friendly spirit, Dawn continues to look forward to volunteering and wishes others would do the same.

“I love being able to meet and help new people. I just think being able to help people is what makes it so special.”

Find out more about volunteering for Very Special Kids

 

Supporting the Hubbard family unit

Very Special Kids supports 46 families in the Hume region, and 900 across Victoria, that are caring for children with life-threatening conditions, by providing 24-hour nursing care at Very Special Kids Hospice and family support services. One of those families is the Hubbard family from Albury, parents Lillian and Terry and children Kyra (17) and Tyson (15).

Tyson, now 15, was diagnosed with Cystic Fibrosis at just six weeks old from a special heel prick test but despite the shock of the diagnosis the Hubbard’s were not surprised.

Lillian says they felt there was something just not right with their little boy.

“We knew there was something wrong. I can’t tell you how weird the feeling is, you are relieved that you know what it is but you know there’s a whole other game you’ll have to play,” Lillian says.

At the time, the family lived in Shepparton but soon moved to Melbourne due to frequent hospital admissions. This is when they first discovered the services that Very Special Kids provides to families with children life-threatening conditions.

Tyson not only battles Cystic Fibrosis, which is an incurable lung and digestive system malfunction, but also has a secondary lung disease and diabetes. Despite his obvious challenges Lillian says Tyson never lets the disease get him down.

“It has made him the kid that he is,” she says.

“He doesn’t like to upset people; he likes to make sure that everyone else around him is ok too.”

This year has been especially tough on Tyson with his lung function slipping and requiring hospitalisation, which involved a round of antibiotics and 14 days of intensive physiotherapy.

The family have been supported by Very Special Kids through a Very Special Kids trained family support volunteer, who helped out with caring for Tyson’s sister Kyra when the children were young.

Lillian says having a family support volunteer was a “life-saver”, especially when Tyson required hospitalisation.

“I don’t know how I would have got through the tough times without the help,” she says.

“The fact that they’re there for the whole family is very important – it’s a family unit and that’s why we love it.”

Now, living in Albury, the family are supported by the Hume Family Support Worker who offers emotional and practical support.

Very Special Kids operates an office in Shepparton with a Family Support Worker providing support to families in the Hume region including counselling and advocacy, and coordinating local programs and events that provide families the opportunity to meet each other and share information and experiences.

It costs $7 million per year to operate Very Special Kids, with all services free-of-charge to families. Please help us continue to support children like Tyson, and their families, by donating to the Very Special Kids Piggy Bank Appeal.

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Parents join together through their journey of grief

Contradicting the natural cycle of life, the death of a child can be the most profound loss for a family. The recent Very Special Kids Bereaved Parent Weekend held at Amberley in Lower Plenty gave parents the opportunity to explore the impact of their child’s death in a safe and affirming space.

Thirteen couples came together for a weekend that included relaxed dining, massages, scenic walks along the Yarra River and yoga, alongside therapeutic activities.

Family Support Worker Puchi Dunne Stern said the supportive environment helped parents share their memories.

“Parents were able to express and reflect on their grief, while also having the opportunity to be pampered and meet other parents who have experienced the death of a child.

“While everyone’s journey may be different, parents indicated that they felt the personal stories shared were reaffirming.”

Similarly, the Bereaved Parent Group in Hume meet on a quarterly basis to discuss their experience of grief and draw on support from other bereaved parents.

A recent meeting in Tongala was attended by two couples who discussed the topic of how the life and death of a child changes identity. Each parent was invited to share some thoughts and feelings around the topic.

Hume Family Support Worker Jenni Coldwell said the group meetings validate grief for the individual and the group as a whole.

“The recent meeting highlighted the intense emotional responses to grief and the common ground of all parents grieving for their child who has died,” she said.

Parent attending the meeting offered the following comments on the benefits of meeting with each other:

“It makes you feel like you’re not on your own. You can let your guard down. It builds hope and happiness for the future and reinforces the importance of the special times, to enjoy the moment and not put off enjoyment until tomorrow.”

“It gives me a chance to meet other parents and talk about our experiences. They get it. We’re able to participate in activities and talk about our children without being looked at as weird or strange.”

“It’s always great to talk about our son and our journey. It is helpful talking to other parents about our life stories and to support each other through our grief.”

“It is helpful to know that others have been through similar things and think and feel the same way.”

The Very Special Kids Bereavement Program builds continuing links with bereaved families through a range of activities including Bereaved Parent Weekends and group meetings, Creative Memories craft sessions, Bereaved Sibling Days and the annual Remembrance Day ceremony.

Commonwealth Bank pretty in piggy pink

Five giant piggy banks, 283 Commonwealth Banks, 60 volunteers and thousands of customers all over Victoria will be getting pretty in piggy pink on Friday 25 September to raise money for the Very Special Kids Piggy Bank Appeal.

As long-standing major partners of the Very Special Kids Piggy Bank Appeal, the Commonwealth Bank will be holding their annual Commonwealth Bank Very Special Day next Friday, with branches decorating their premises in all things piggy and pink, and inviting customers and local residents to join in a range of activities including sausage sizzles, cake stalls, piggy toy sales and games.

The Very Special Kids Piggy Bank Appeal runs throughout September and seeks to raise more than $1 million to support families caring for children with life threatening conditions.

Very Special Kids CEO Dr Sarah Hosking said that the contribution of Commonwealth Bank has been instrumental in the continued success of the appeal.

“Commonwealth Bank has supported us since the appeal began in 1998, helping us to raise millions of dollars and make a significant difference to the lives of the brave families we support,” she said.

Commonwealth Bank Regional General Manager Vic Melbourne Michelle Winzer and Regional General Manager Victoria & Tasmania Richard Porter, said the Commonwealth Bank is proud to continue its association with Very Special Kids in the amazing work they continue to do each and every day.

“Collectively we recognise that we can make a major difference to the lives of families with kids with life threatening conditions and it thrills us to be involved in the appeal.

“We encourage all Victorians to join with us by buying some piggy merchandise or making a donation during the Piggy Bank appeal this September,” they said.

Very Special Kids supports more than 900 Victorian families caring for children with life-threatening conditions, by providing 24-hour nursing care at Very Special Kids Hospice and family support services.

Commonwealth Bank Very Special Day events will be held at branches all over Victoria; a giant piggy bank will make an appearance at the following locations:

  • Commonwealth Bank Malvern
    146 Glenferrie Road, Malvern
    10.00am-2.00pm
  • Commonwealth Bank Ashburton
    205 High Street, Ashburton
    10.00am-3.00pm
  • Commonwealth Bank Rosebud
    1073-1075 Point Nepean Rd, Rosebud
    10.00am-3.00pm
  • Commonwealth Bank Castlemaine
    167 Barker Street, Castlemaine
    10.00am-4.00pm

Find a Commonwealth Bank branch near you

Teens take on Mittagundi

18 teenagers, who have siblings with life-threatening conditions, escaped the city to Mittagundi Outdoor Education Centre for a week of challenges and fun. We caught up with Very Special Kids Family Support Worker Jess Birnbaum to find out how it went.

What happened on the camp?
So many activities! We began with hiking, camping and cross country skiing across a three day period up near Trapyard Gap in the Alpine National Park and at the Mittagundi farm we were wood chopping, gardening, cooking, log de-barking and fence stumping. The young people that attended also had the chance to share stories about their families and develop invaluable peer connections with one another.

What was the highlight?
The camp presented us with many challenges, we were faced with rain, snow, sleet and sunshine (sometimes all in one day)! Our feet and hands were cold, there was no electricity or flushing toilets and at times we felt like giving up. But we pushed through and the learning and self -discovery that came from this helped to foster a massive sense of achievement, togetherness, trust and respect. Many young people reported the highlight for them was skiing or seeing snow for the first time, but overwhelmingly, most people identified the support and encouragement they received from their peers and the connections made as the thing they loved most about the camp.

How was the camp made possible?
We worked in partnership with Mittagundi to try and obtain funding for the camp and it was through the generous donation and financial support from the Calvert Jones Foundation that the whole experience was made possible. It’s also worth thanking the families themselves for encouraging and supporting these young people to take a week out from their creature comforts to bravely come along and charter the unknown.

What benefits were there for those that attended?
Without a doubt one of the major benefits of the program was having the opportunity to spend a whole week away together, the very act of digging deep and banding together to support one another through the challenges we faced is what made this camp so rich and rewarding. Time spent connected to nature, without the distraction of technology or mobile phones allowed for deep discussion and exploration of the many complex layers of emotion felt by these extraordinary young people. Being pushed outside our comfort zones forced us to discover things about ourselves that helped us redefine our goals and foster a huge sense of accomplishment. The peer connections formed helped young people develop a greater sense of self and a sense of belonging.

Meet Bill Hearn – Very Special Kids volunteer

Meet Bill Hearn, 68. Bill has been volunteering on the Very Special Kids Piggy Bank Appeal for the past 17 years.

Why do you continue to volunteer for the Piggy Bank Appeal?
Not only is volunteering fun, but you are exposed to a very generous side of humanity. When you explain to people the support given to families by Very Special Kids, they respond in great way.

I am inspired by the work of Very Special Kids Patron Sister Margaret Noone and the passion and compassion she has for supporting children with life-threatening conditions and their families.

Assisting children with life-threatening conditions and their families is so important. The trails are vital in raising awareness of Very Special Kids as well as raising money to support families. Not only does the public need to know about the important work of Very Special Kids, but families need to know where they can access assistance when they need it.

What do you most enjoy about volunteering?
I enjoy meeting the families supported by Very Special Kids and seeing the support they receive not only for their child, but for the whole family. They are the real heroes. It warms my heart to know the tiny bit I contribute is making a contribution to their lives.

I also get a lot of fun out of volunteering. The teams you go on trails with are filled with joy and life and I enjoy meeting other volunteers with different life experiences. I have made hundreds of friends. Some of the people I have been on trails with have become very good friends.

What would you say to someone thinking about volunteering?
Recognising there is not only a real need, but a real opportunity to volunteer is all you really need. You’ll find that your involvement makes as much a difference to yourself as it makes to Very Special Kids and the families and children it supports.

I would also say that volunteering is a good way to keep the grey matter working and a smile on your face. I don’t know of many other ways to help families and have so much fun at once. If you don’t like fun, be careful because you are going to be exposed to a lot of it.

Volunteering is an integral part of the service delivery and fundraising model of Very Special Kids. We are proud that more than 720 volunteers generously give their time to support families of children with life-threatening conditions.

Find out more about volunteering

Helping Jakob and Dani meet their needs

Very Special Kids supports 42 families in Gippsland. One of those families is four-year-old Jakob Engley and mum Dani McLennan from Traralgon.

Jakob has an undiagnosed genetic condition that affects his respiratory system, making it difficult for him to breathe and resulting in dwarfism, profound deafness and preventing Jakob from being able to talk.

Dani describes Jakob as “curious and cheeky, with a great personality”. He loves eating food, listening to music and swinging on swings and his new assistance dog, Zola. Although unable to talk, Jakob is learning to use Auslan and PECS, Picture Communication Exchange System, to communicate with others and will begin kindergarten next year.

Jakob requires around-the-clock care from Dani to meet all his needs. He attends a number of therapies requiring weekly travel from Traralgon to Melbourne, including occupational therapy, speech therapy and physiotherapy. His condition has also required travel overseas for treatment.

Dani says Very Special Kids has provided much-needed emotional and practical support through the Family Support Worker in the Traralgon Office.

“Our Family Support Worker helps by being there for face-to-face contact, offering ideas about events and places to take Jakob and assistance and advice about how to fund Jakob’s treatments,” she says.

Very Special Kids operates an office in Traralgon with a Family Support Worker providing support to families in the Gippsland region including counselling and advocacy, and coordinating local programs and events that provide families with the opportunity to meet each other and share information and experiences.

While Jakob is yet to visit Very Special Kids Hospice, Dani says it’s reassuring to know that hospice is there for respite care.

“If I should need someone to take care of Jakob, there is a specialised place to take him where his care needs will be understood and catered for.”

Dani and Jakob playing

Very Special Kids supports 42 families in Gippsland, and 900 across Victoria, that are caring for children with life-threatening conditions, by providing 24-hour nursing care at Very Special Kids Hospice and family support services.

Very Special Kids operates an office in Traralgon with a Family Support Worker providing support to families in the Gippsland region including counselling and advocacy, and coordinating local programs and events that provide families with the opportunity to meet each other and share information and experiences.

It costs $7 million per year to operate Very Special Kids, with all services free-of-charge to families. Please help us continue to support children like Jakob, and their families, by donating to the Very Special Kids Piggy Bank Appeal.

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The Piggy Bank Appeal will be coming to Gippsland:

  • Thursday, 3 September 2015, Commonwealth Bank Sale, 10am – 2pm
  • Thursday, 3 September 2015, Star Hotel Sale, 5pm – 9pm
  • Friday, 4 September 2015, Commonwealth Bank Traralgon, 11am – 4pm
  • Friday, 4 September 2015, Morwell Hotel, 5.30pm – 8.30pm
  • Saturday, 5 September 2015, Inverloch Lotto, 9am – 1pm
  • Thursday, 17 September 2015, Commonwealth Bank Morwell, 10.30am – 3pm
  • Thursday, 17 September 2015, Royal Exchange Hotel Traralgon, 5.30pm – 8.30pm
  • Friday, 18 September 2015, Commonwealth Bank Bairnsdale, 10am – 3pm
  • Friday, 18 September 2015, Morwell Bowling Club, 5pm – 8pm
  • Saturday, 19 September 2015, Bunnings Morwell, 9am – 4pm