Tag Archives: hospice

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. 

Steph in her wheelchair, smiling

Steph’s story

Thirteen-year-old Steph has been in and out of hospital her whole life. At 10-weeks-old Steph was diagnosed with nystagmus.  

Then after years of extensive nerve damage to Steph’s hands, feet and mouth, the family received news that she has mitochondrial disease, a debilitating and potentially fatal condition.    

At age eight, Steph lost the ability to walk and after the death of her father that same year, Steph’s mum Kylie knew that her family needed extra support. Kylie heard about Very Special Kids services and decided to self-refer. 

At that time, it was more about getting help for Robbie (Steph’s brother) because I didn’t feel I had the capability or capacity to truly help him through all of this, but what I quickly learned was how much Very Special Kids supports the whole family, Kylie said. 

Thanks to the incredible generosity from across our Very Special Kids community, Steph and her family have received tailored support through counselling, advocacy, networking and peer activities which has helped everyone cope through the daily challenges of her illness.  

Steph shares, “Very Special Kids is the most amazing thing that’s ever happened to me. I have a disease that drains your energy, until you give up. I want other kids and families to have faith. I want other kids to look their disease in the eye and say ‘you suck, but I can beat you’. The team at Very Special Kids has helped me to see that.”  

Steph also stays at our children’s hospice where she enjoys taking part in sensory and visual therapies while being cared for by our multidisciplinary team. By staying at the hospice, Steph’s family have received much-needed respite. “Going in you just instantly feel at home… In every way they think about ‘how do we ease the burden?’,” says Kylie.  

“Very Special Kids has given me the confidence I need to continue with a happier life. I’ve made so many different friends there, and it’s just truly inspiring to see people get up, and come and look after sick children,” said Steph. “When I think of Very Special Kids, I think of how much love they give and how much determination they have. What they do is amazing. It’s unbelievable. It’s spectacular.” 

Very sick, very special, and very well looked after

They say home is where the heart is and for this family, it’s all about sticking together. Alissa and Adam Higgins, parents of 15-year-old Jerome, or as they call him Jerry, 9-year-old Lily and 18-year old Claire, want nothing more than for their children to be happy and have the companionship of their entire family.

In 2001, when Jerry was just 3 months old he was diagnosed with Moebius syndrome and osteoporosis. In 2002, his father Adam was deployed to Afghanistan with the Australian Defence Force (ADF), but quickly returned home after a couple of months due to complications with his son’s illness. Adam is still a member of the ADF and fulfils his commitments at both sea and shore to this day. Jerry has since been labelled with complicated issues at later stages, these include epilepsy, autism and cerebral palsy. This means he is ambulant yet requiring assistance of a wheelchair when venturing outside the home. Jerry is also non-verbal and is non-orally fed

A lot of the family time for the Higgins was in hospital early on, as they strived to stay together. Even great grandpa was always around; making sure that feeling of home was wherever they were.
In 2002, after Jerry had been in the ICU, Alissa and Adam were referred to Very Special Kids by The Monash Children’s Hospital, as it was now very clear it was a life-threatening condition.

Alissa and Adam quickly came to find how helpful the support and facilities offered by Very Special Kids were, not only for Jerry, but for themselves and their daughters Claire and Lily.
While they remained dedicated to keeping the family together as much as possible, it was nice for Claire, only 3 at the time of Jerry’s birth, to be receiving some extra company that her parents couldn’t give to her as much as they would have liked to.

Alissa being Jerry’s full time carer, was especially thankful for the Family Support Worker, as she “gave us that assurance, that we were going to be ok, we would have our bad days and she let me know that that’s ok”.

Although many of Very Special Kids services were used by the Higgins family, it took Alissa 13 years to work up the courage to let Jerry actually stay in the hospice. As like any parent, the idea of being away from her ill child was a little hard to comprehend and she had grown accustomed to doing everything herself. It isn’t always easy to admit you need help but now Alissa see’s the benefits not only for her but for Jerry too “he loves it there, he gets a lot of attention, it’s all on him”.

“Jerry gets sick very easily so he hasn’t been able to maintain a regular school attendance. But at Very Special Kids he gets to socialise without the worry of getting sick… And it’s good that he loves it because you don’t feel that sense of guiltiness as a parent when you put your child in care.”

Alissa told us their families unity has increased since Jerry has stayed at the hospice, as having time has allowed for a less hectic lifestyle and they get to be together, and that is what they truly value most, “we’re lucky in that way”.

All the funds you raise at the 24 Hour Treadmill Challenge will go directly to children just like Jerry, who receive 24 hour specialist care at Very Special Kids Hospice. To sponsor a runner visit www.vsktreadmill.org.au

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How to do Easter arts and craft

The Easter holidays are a fantastic time to get crafty! Very Special Kids embraces the creativity and expression involved in art to improve and enhance the physical, mental and emotional well-being of children.

Our on-site Art Therapist helps our very special kids create beautiful paintings and crafts using their emotional, sensory and motor skills. Here we share with you our Easter craft fun and provide a how to guide for creating your own crafts at home.

Art Therapy is a new complimentary therapy program at Very Special Kids offered to children with a life-threatening condition, facilitated by qualified Art Therapists provided by The Art Cabriolet. The program is also facilitated for children receiving end-of life care to explore their feelings and create memories that will live on for their families. Our Art Therapy aims to positively engage children and young people from diverse backgrounds and abilities, and from a range of developmental stages, offering an outlet for expression and give voice to their feelings and concerns.

The program is new to Very Special Kids Hospice and uses art methods and interventions to aid in the treatment of a condition or disability, providing children with opportunities for self-expression and emotional release.

 

Very Special Kids Hospice Appeal

Very Special Kids Hospice in Malvern is a children’s hospice where families can access planned and emergency respite, as well as end-of-life care.

It costs $7 million per year to operate Very Special Kids, and from April through June, Very Special Kids is fundraising to ensure we keep our doors open.

Please donate to our annual Hospice Appeal.

It was Australia’s first children’s hospice when it opened in 1996 and it remains the only service of its kind in Victoria for children with life-threatening conditions. Most children who stay at Very Special Kids Hospice have complex medical and care needs.

Providing 24 hour specialist nursing care, Very Special Kids Hospice is a home-away-from home that features bright lounge areas, soft-play areas, gardens, a music therapy room, a multi-sensory room and fun-filled school holiday and weekend activities.

As an integral element for our family support program, Very Special Kids Hospice provides families with much-needed planned and emergency respite care. The hospice makes it possible for families to have a break, to go out for dinner, on a holiday, or just to go home and catch up on the sleep they so desperately need.

During a respite stay at Very Special Kids Hospice, the hospice team of doctors, nurses, carers and volunteers become familiar with the child’s care needs and  work to a routine the child knows at home, which provides parents or carers the ability to relax.

While the family support is provided free-of-charge to those who need our care, it costs Very Special Kids $1,000 to provide one bed night at our children’s hospice.  We rely substantially on generous community fundraising and there are a number of ways you can donate to our important children’s charity.

Very Special Kids will also see the support of more than 1,000 participants as they compete in the 24 Hour Treadmill Challenge from 22-23 May, to raise funds for Very Special Kids Hospice.

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Footy fever at Mates Weekend

It was footy madness for the boys that attended the Very Special Kids Mates Weekend in May.

The weekend kicked off with a visit from musical legend Greg Champion who entertained the boys with footy songs while they prepared signs for the match they were going to that evening.

Then it was off to the MCG for dinner and to watch the Melbourne vs Sydney game, with Sydney taking the win.

The adventure came to a close the next day with a family BBQ to celebrate Mother’s Day.

The Very Special Kids Mates Weekend for boys was made possible by the generous support of our volunteers, Cooper and Milla’s, Crown Coaches, Melbourne Football Club and Art Cabriolet.

Mates Weekends are designed to bring together children who have high cognitive ability and are facing similar physical challenges. Very Special Kids also runs Mates on the Move Weekends for children that are very mobile and have developmental and intellectual disabilities.

Thanks for helping Imyjen

More than $600,000 was raised through the 24 Hour Treadmill Challenge from 22 to 23 May. Thank you to all the incredible participants who helped to raise funds for children like Imyjen who stay at Very Special Kids Hospice.

14 year old Imyjen Steele loves listening to music, riding the bus, and hanging out with her sister Auraria.

At three months old Imyjen was diagnosed with Swartz Jampel Syndrome, a condition preventing her from walking, talking or moving her muscles, and requiring her to use a wheelchair.

Caring for Imyjen is all consuming for single mum Christine Stow, who says she was confused about where to get help before finding Very Special Kids.

“Very Special Kids has been like a hand out of the darkness,” she said.

Christine said she was impressed that Very Special Kids Hospice had the equipment to cater for Imyjen’s needs.

“Getting care from other places was always a big hassle, but Very Special Kids is understanding and easy. I often found myself holding my breath with previous services, but when Imyjen’s at the hospice, I can relax,” she said.

24 hour challenge raises $600k for kids in 24 hour care

32 treadmills were kept in continuous motion for 24 hours from 22 to 23 May raising $629,000 for children in 24 hour care at Very Special Kids Hospice.

1,118 participants including celebrities, AFL players, politicians, and people that have been touched by Very Special Kids, joined forces to keep the treadmills going and raise as much money as possible.

House Rules Victorian contestants Bronik and Corrine, footy players Leigh Montagna and Grant Birchall, Stonnington Mayor Melina Sehr and State Member for Malvern Michael O’Brien, all jumped on a treadmill to motivate and entertain participants.

By the end of the 24 Hour Treadmill Challenge participants had covered 5,771 kilometers, guzzled 576 litres of water, listened to more than 500 songs, and far exceeded the event’s goal to raise $500,000 through donations from friends and family.

The funds raised will go to Very Special Kids Hospice, Victoria’s only children’s hospice, providing specialist care for children with life-threatening conditions.

Very Special Kids CEO Sarah Hosking says she’s astounded by the support from the community.

“The funds raised ensure we can continue to care for children with life-threatening conditions and their families. We’re extremely grateful for everything everyone has achieved,” she said.

Very Special Kids supports 900 Victorian families that are caring for children with life-threatening conditions. Its services can be accessed from a child’s diagnosis through bereavement, and include respite and end-of-life care at its children’s hospice and counselling for families.

The 24 Hour Treadmill Challenge was made possible through the support of The Fitness Generation, True and Seven News.

Star struck at treadmill challenge

A host of media personalities and AFL footballers will take part in Friday’s 24 Hour Treadmill Challenge, which aims to raise more than $500,000 for children in 24 hour care at Very Special Kids Hospice.

As a media partner of the event, Channel Seven personalities will be taking on the challenge. The Victorian contestants from the current series of House Rules, Bronik and Corrine, will kick things off at 9.00am on Friday morning. AFL Game Day panelist and St Kilda footballer Leigh Montagna appears at 4.00pm on Friday, while Seven’s AFL presenter Sam Lane will help bring the event to a close from at 8.00 to 9.00am on Saturday morning.

Former Hey Hey It’s Saturday and Dancing With The Stars host Daryl Somers will hit the treadmill at 10.00am on Friday morning, just after City of Stonnington Mayor Cr Melina Sehr and State Member for Malvern Michael O’Brien MP.

AFL footballers take over on Friday afternoon, with Western Bulldogs players, Lynden Dunn (Melbourne) at 3pm, Grant Birchall (Hawthorn) at 6pm and Alex Johnson (Sydney Swans) at 9.30pm.

Meet Sue Kearney Hospice Manager

Very Special Kids Hospice is one of a kind in Victoria, offering eight beds for respite and end-of-life care for children with life-threatening conditions, with nurses available 24 hours, and family accommodation on site.  At the helm of this operation is Hospice Manager Sue Kearney.

Sue leads a team of 20 nurses, 15 carers, four doctors, the hospice music therapist and hospice cook, with the support of Very Special Kids’ Chief Medical Officer Simon Cohen.

A registered nurse with close to twenty years’ experience in paediatrics, Sue tirelessly works to enable her team to offer the best care possible to children staying at the hospice.

Sue, a mother herself, says access to the hospice is essential for families who need a much-needed break.

“When I leave the hospice every day, I feel lucky to go home to two healthy children and unwind.  I can go to the beach.  Go out for dinner or a movie.  I can call on a friend to babysit and take some time out for myself and my husband.  Sadly, this isn’t possible for many of the families we support,” she said.

The Very Special Kids Hospice team work hard to make the experience for children staying there a home away from home, with comfortable surroundings and fun activities.

“The hospice is filled with warmth and love, laughter and tears, delicious smells from the kitchen and those familiar sounds of home like a TV blaring a cartoon, a teenager playing a musical instrument or a story being read to a child,” said Sue.

Sue said that even though at times the work can be tough, she loves her job because of the families.

“Whether it’s hard times or good times, I get to spend precious moments with families and help them get the respite they need.”

Very Special Kids supports 900 Victorian families who are caring for a child with a life-threatening condition by providing access to Very Special Kids Hospice and professional counselling services.