Monthly Archives: February 2017

Gemma’s story – riding the extra mile

Five year old Gemma Tregent is a happy and cheeky girl that enjoys music, painting and playing tricks on people, but she also requires constant care for her basic needs.

Gemma has severe cerebral palsy and epilepsy which is the result of a hypoxic brain injury from when she was born. Because of her condition Gemma is unable to walk or talk, is peg-fed and has up to four or more seizures per day.

With Gemma often in and out of hospital, her mother Ally says that the family have learnt to take it one day at a time.

“We never know what’s going to happen with Gemma. She gets regular chest infections and her seizures are out of control – it’s frustrating but it must feel horrible for her. I can’t imagine what she’s going through.”

The Tregent family turned to Very Special Kids when Gemma was six months old, for respite care at Very Special Kids Hospice and emotional support.

“Gemma loves staying at the Hospice. Last year she didn’t spend much time at kinder due to being really unwell, so she loves being around the other kids, especially kids that are more like her”

Ally says that having access to Very Special Kids Hospice allows her and her partner Lucas to do things they wouldn’t normally have the chance to do.

“Having the respite makes a lot of difference. It gives us time to catch up on sleep, see friends and spend time with our other daughter Grace.”

Very Special Kids also helps the Tregent family by providing a trained Family Support Practitioner for emotional support and guidance.

“Our support worker is Angela and she’s been amazing. Sometimes it gets very tough so it’s really helpful to have someone to talk to. Her support is always consistent and she understands when other people don’t.”

Ride the extra mile to support sick children like Gemma

On the 11-17 March the Chain Reaction Ultimate Corporate Bike Challenge is taking place to raise funds for sick children like Gemma.

The funds raised from the challenge are the catalyst for a large and important upgrade to the Hospice to ensure Very Special Kids can continue to provide benchmark standards of 24-hour nursing care for children with life-threatening conditions.

To sponsor a rider or to make a donation please click here.

Bereaved children experience grief very differently to adults

Written by Angela Flood, Family Support Practitioner at Very Special Kids

Bereaved children experience and express grief very differently to adults and also quite differently to each other.

I remember working with a family whose child had died at Very Special Kids Hospice. The parents and I had made the decision to wait until morning came to break the news to the sibling.

We took the little boy aged 6 into the room where his sibling lay and explained that they had died peacefully during the night and that they were now in heaven.

The sibling cried briefly, asked some questions and then left the room. Less than five minutes later he was eating pancakes and laughing at a cartoon on TV. His parents were quite concerned by this behaviour and asked me things such as:

Does he understand what has happened?

Is this normal behaviour, should we be worried?

My answers were simple, “yes I think he understands, his behaviour is appropriate for a 6 year old.”

Children unlike us adults are very good at switching their grief on and off. This does not mean they have not understood what has happened, it just often means that they have taken in what has been said and have been sad for as long as they can at the time.

Children will often grieve in short bursts, before needing to move on to something else. Sometimes I think this style of grieving would be great for us adults too.

Also unlike adults, children are not necessarily affected by what others think grief should look like, although they can learn from adults some of the ways of grieving.

Some parents try not to show emotion or sadness in front of their children to try and protect them, but in reality children need to learn that it is okay to be sad and cry if they need to.

“I did not want to be curled up in the foetal position all day, but I did want my child to know it was okay to cry and express sadness” – parent supported by Very Special Kids.

To find out more information on Very Special Kids bereavement support, please click here.

The Amazing Ride

Hundreds of families braved the unseasonable conditions to be part of the inaugural Amazing Ride raising funds to support children with life threatening conditions.

Over 200 riders took off on either the 1km Baby chino ride, the 14km Milkshake ride or the more challenging 32km Latte lap.

Riders had to solve clues and answer bonus questions along the way to go in the draw to win a brand new bike!

Riders also enjoyed the festival area with face painting, food vans, games and a free bike tune and wash.

A special thanks to all riders and Cycling Victoria for supporting Very Special Kids.

Rollercoaster fun at Adventure Park Family Day

31 families enjoyed a fun day out at Adventure Park in Geelong for the recent Very Special Kids Adventure Park Family Day.

Despite the overcast weather in the morning, this didn’t stop families travelling from places such as Hamilton and Ballarat to enjoy a day out with other children and their families.

One of these families are the McKiernan family from Corio who turned to Very Special Kids to help them care for their 14-year-old son Bryce who has kabuki syndrome and kidney disease.

The level of care Bryce requires creates additional challenges for his parents Stacey and Darrin, as well as their other children Tori (20), Riley (18) and Hollie (12).

“Very Special Kids have been amazing” says Stacey, “the kids love going to the Family Days, it’s a special day for them to just have fun and enjoy themselves like regular kids.”

There was something for everyone – splashing about in water, hurtling down massive slides, special appearances from Queen Elsa and Princess Anna from Frozen, and of course the new rollercoaster, which was Bryce’s favourite.

The Adventure Park Family Day also provides families with a unique opportunity to socialise with other families facing similar challenges – allowing siblings and parents to develop a peer-support network in a fun and friendly environment.

A special thanks to The Turi Trust who generously sponsored the event and provided 4 volunteers from Turi Foods and Golden Farms to help out with the activities on the day. We couldn’t put on an event as successful as this without your support.

Josh’s story – riding the extra mile

13-year-old Josh Winrow has a rare epileptic syndrome named Lennox-Gastaut that causes potentially fatal seizures. He also has an intellectual disability and is non-verbal.

As well as providing expert medical care for Josh at Victoria’s only children’s hospice, Very Special Kids also support all members of the Winrow family, which includes his mother Vanessa, father Scott and 10-year-old sister Phoebe.

Very Special Kids Hospice, with its 24-hour nursing care, is the only place Vanessa can access when she needs to have longer stays away from Josh.

“When Josh goes to the hospice I can walk out the door and I know he’s going to be fine. There’s a real sense of security that he’s in good hands.”

“Josh loves going to the hospice. He’s got lots of doting carers that know him well. Earlier this year, I was able to take a weekend away to Sydney to visit family. The hospice allowed me to take the time out I needed,” Vanessa says.

Vanessa also receives emotional support from their Family Support Worker and attends coffee mornings where she can compare notes with other mums.

“Having someone there to talk to is definitely helpful when you can’t talk about certain things with your friends, and you don’t want to feel like you’re burdening them with stuff.”

Having a brother with a life-threatening condition can also be hard for Phoebe. Very Special Kids supports Phoebe through our Sibling Program. Phoebe attends the Sibling Days every school holidays where she has fun and explores her emotions in a safe space with peers she can relate to.

“It’s essential for Phoebe,” says Vanessa. “It helps to have something that’s entirely about her, where she is the special kid for that time. And it gives her the opportunity to think and talk about what’s on her mind.”

Ride the extra mile to support sick children like Josh

On the 11-17 March the Chain Reaction Ultimate Corporate Bike Challenge is taking place to raise funds for sick children like Josh.

To sponsor a rider or to make a donation please click here.

Volunteers needed in the north-west to help local families in need

Very Special Kids helps children with life-threatening conditions and we’re currently looking for volunteers in the north-west region to help us support children and their families that live in the area.

Three year old Jana Hammoudeh has Leigh’s Disease, a rare genetic disorder that means she’s unable to walk, talk and is fed through a peg. Just over two years ago, Jana’s family joined Very Special Kids to access a range of support services including being paired with a volunteer named Emily.

“Emily provides special and really helpful support for our family, particularly our older daughter Malak (5-years-old)” says mother Yasmin Akel.

“Because of Yana’s complex medical needs, I often don’t have time to do things like take Malak swimming or to the playground, but Emily gives her this time. They play hairdressers and just have fun together, Malak loves the attention and feels like she fits in.”

Emily (26-years-old) visits the Hammoudeh family every fortnight and says her volunteer role is rewarding.

“The family have a lot going on so it’s great to give them extra support and help where I can. Malak’s always waiting by the door for me which is nice and shows I’m needed. It’s good for Malak to be given that one on one attention, to have a break and have fun. It’s very rewarding knowing that I’m helping.”

Read the Hammoudeh family story in the Wyndham Star Weekly.

How to become a volunteer

Very Special Kids trained Family Services Volunteers help families with the practical and emotional demands of caring for a child with a life-threatening condition, and can also support families through bereavement of their lost child.

Every volunteer completes a 27 hour training program to equip them with the skills and knowledge needed to support families who have a child with a life-threatening condition. The training includes topics such as communication and listening skills, loss and grief and ways of working with children. More info on Volunteering here.

Very Special Kids Family Support Practitioner, Puchi Dunne-Stern says “We urgently need volunteers in the north-west region who can help families like the Hammoudeh’s. When a child has a life-threatening condition, it impacts on the whole family. Care for these children can be physically and emotionally exhausting so it’s extremely important they get the support they need.”

There are currently 21 families in the north-west region in need of volunteer support.

If you are interested in volunteering you will need to attend a volunteer information session:

Monday 13 February (Werribee) Wyndham Park Community Centre, 55-57 Kookaburra Ave
Wednesday 15 February (Craigieburn) Craigieburn Global Learning Centre, 75-95 Central Park Ave
Thursday 16 March (Malvern) 321 Glenferrie Rd Malvern

Please email mail@vsk.org.au to book your session attendance. State your name, contact number, desired info session date and how did you hear about us.

Sarah’s story – riding the extra mile

17-year-old Sarah Rogers is a happy teenager that enjoys music, going to school and playing with her brother and sister, but she also requires constant care for her basic needs.

Sarah has Cerebral Palsy, Spastic Quadriplegia, Epilepsy, Scoliosis and a vision impairment. She is unable to walk or talk, or eat by herself, and requires a BiPAP machine to regulate her breathing.

With Sarah often in and out of hospital, mum Lorelle Rogers says that the family focusses on enjoying each day.

“You never know with Sarah, when she could be in hospital. We just enjoy the time we have. She could have years left in her, but we don’t know,” said Lorelle.

The Rogers family turned to Very Special Kids when Sarah was 11, for respite care at Very Special Kids Hospice and emotional support.

Lorelle said that having access to Very Special Kids Hospice makes everything easier.

“With Sarah’s deteriorating health we have not been able to access other respite care services; she needs nurse’s care.

“I don’t have to worry when she’s at the hospice. She’s safe and she knows the staff.

“It allows me to have one on one time with our other children. It can be hard to find that time,” she said.

Ride the extra mile to support sick children like Sarah

On the 11-17 March the Chain Reaction Ultimate Corporate Bike Challenge is taking place to raise funds for sick children like Sarah.

To sponsor a rider or to make a donation please click here.

Interactive art adventures for girls weekend

Recently four very special teens had a fun and interactive arts experience at our Very Special Kids girls weekend.

The weekend kicked off with a Friday night Mexican feast at the hospice. The girls enjoyed being mini MasterChef’s and helping prep the chicken fajita wraps.

On Saturday the girls glammed up and were treated to makeovers before heading into the city to visit the ArtVo museum.

ArtVo is a new immersive art gallery or ‘trick art’ gallery – the first of its kind in Australia. Unlike normal art museums, visitors are encouraged to touch and interact with the artworks.

The girls absolutely loved this and had a ball taking photos and becoming part of the art.

“The art gallery was so cool! I loved the mermaid picture with me in it!” said 13-year-old Amelia.

In addition to the fun activities, Mates Weekends are a great chance for very special teens to create meaningful friendships, hang out, and feel like regular kids with normal lives.

18-year-old Chantelle agrees, “I liked hanging out with girls that are in the same boat as myself and doing really fun things we wouldn’t normally do.”

The girls who attended, despite having physical challenges still have very high cognitive ability. They are able to relate, and share their feelings with one another, without the fear of judgement or misunderstanding. It’s the perfect setting to forget their worries and just enjoy a fun-filled weekend

This weekend was made possible by the generous support of volunteers, Platform 28 and a very special thank you to Upstream Foundation for funding the Very Special Kids Mates Weekends program.