Monthly Archives: September 2017

How would you feel?

Words from Tommy Nicholds, a sibling supported by Very Special Kids

How would you feel if your sibling couldn’t walk for the rest of their life?

Well, my sister can’t, because she has a brain disease by the name of Ataxia Telangiectasia, also commonly known as A-T.

Over the last year and 3 months my Mum and Amelia, my older sister, have gone into hospital at least 5 times, which has been very hard being separated from each other.

In June 2016 Amelia was diagnosed with ovarian cancer, which is one of the complications of A-T. I don’t remember the exact date but it was a Friday night after school and I was told to go to my Pop’s house.

When I got to my Pop’s house they sat me down and we had a discussion with Amelia and Mum on FaceTime. That night I was very worried because no one knew what was going on.

The following week the doctors found out that Amelia had a 14 centimetre wide tumour which was filled with fluid. I didn’t know much about cancer but I still broke down in tears because I knew it was dangerous.

That week I was very down and emotional because I didn’t get to see anyone in the family, I couldn’t help but cry in bed some nights.

It was a week before my birthday and I was begging Mum to come home for the weekend. They did, which restored my happiness. An hour before my party Mum explained that Amelia had gotten a lot worse. They had to leave straight after my party to go back to the Royal Children’s Hospital. I was devastated and it was in the back of my mind during the whole party.

Two days later doctors performed an operation to get the tumour out of Amelia. I was feeling very nervous that day about the operation, but looking forward to seeing Mum and Amelia later that week. The operation was a success.

Now Amelia wakes up smiling, laughing and playing with her friends every single day. That to me is true inspiration.

Mayor’s Charity Gala supporting Very Special Kids

Very Special Kids is delighted to have been chosen as the charity partner for the upcoming Mayor’s Charity Gala hosted by the City of Stonnington on Thursday 12 October.

Starting at 7pm, the Mayor’s Charity Gala will be an evening of glittering entertainment featuring an exclusive performance by the one and only Tina Arena, Cameron Daddo as MC and fine dining by Peter Rowland Catering.

Very Special Kids CEO Michael Wasley says “on behalf of Very Special Kids, we are delighted for the wonderful support of the City of Stonnington and Mayor Jami Klisaris (pictured above)

It costs more than $7.6 million each year to operate our children’s charity and we rely substantially on the generous support of the community to provide our services, which is why an event like The Mayor’s Charity Gala is so important.

Proceeds from the Gala will have a significant impact on achieving our commitment to care and support over 900 children and their families this year.

Very Special Kids continues to rely, and be supported, by our local communities in which we operate, and no local community supports Very Special Kids any greater than Stonnington.”

Book tickets now.

Walking in the shoes of our CEO

It was with much relief, sore legs and a healthy dose of achievement that Very Special Kids CEO, Michael Wasly crossed the finish line after nine and a half hours of walking the 50km Upstream Challenge last year.

The Upstream Challenge is a 50km walk or run from Melbourne to Donvale along the picturesque Yarra river.

Michael concedes that his one practice hike was ill preparation for the 50km walk, but with a good supply of blister patches and the success of a 108 hole golf marathon still fresh in his mind, he was not one to shy away from the challenge.

“I like a challenge, particularly if it involves new experiences of places, so the thought of walking the Yarra was interesting,” said Michael.

The idea of spending the better part of a day in the pleasant, green bushland surrounds of the Yarra River is alluring in itself yet Michael views the walk as a great way to support Very Special Kids, which is predominately self-funded.

“The money we received in 2016 from the Upstream Challenge enabled us to provide hospice access for about 60 families, so it was a significant contributor,” explained Michael.

Raising money for a charity is a great motivator for a physical challenge like this but convincing others to sponsor you can prove somewhat of a hurdle in itself so here’s what Michael has to say.

“We exist to support children with life-threatening conditions and their families. Caring for a very sick child is a full time job and it places enormous strain on a family’s wellbeing, in particular the siblings,” said Michael.

Very Special Kids uniquely provides continued and ongoing support to families during and after the death of their child so it’s a critical role that the organisation plays in a family’s future.

So whether you’re in it for the burger and massage on completion, the scenery, the physical challenge or to support us at Very Special Kids, Michael knows first hand that you’re sure to reflect on your walk with much well deserved pride.

If this sounds like something you would like to do, you can register for the Upstream Challenge here.

Supporting the Patty’s through bereavement

Allegra Patty was a gorgeous, bright and cheeky little girl. Her parents Marissa and Dean gave birth to her in 2010, and at the time her older brother Callum was only two-years-old.

At just 22-months of age after many concerns and testing, Allegra was diagnosed with Dravet Syndrome, which is also known as severe myoclonic epilepsy of infancy.

The syndrome meant that Allegra could have up to 100 seizures in a day, and it impacted her development from moving forward after her first two years of life.

Despite Allegra’s syndrome, she was an exceptionally brave and happy little girl.

“She was very bossy and cheeky and just loved life. She was always very happy and she loved learning new things. She would try anything, she did not have any fear” explains Marissa.

Very Special Kids began supporting the Patty family in 2013, and Allegra regularly stayed at the hospice.

“It was really good because we didn’t have anyone else who could look after her. So it meant we could all get some sleep, and we could go and do things with Callum we couldn’t usually do with Allegra” explained Marissa.

Callum also began to receive sibling support at the same time, with a family home volunteer visiting him regularly.

“In the last four years he has only missed one sibling day, he loves them, and I think it’s great for him. It was also great to have the family volunteer come and spend time with him because I spent so much time with my daughter and it was good to have someone who made him feel special.”

At just five-years-old, last year in June, Allegra passed away. Since then the family have been supported with many different bereavement programs at Very Special Kids. Callum now goes to Bereaved Sibling Days and still loves them as much as ever.

“I think one of the biggest things is getting different families together, it’s really useful to meet people in similar situations” said Marissa, who attends regular Coffee Mornings put on by Very Special Kids and attended a Bereaved Parent Weekend recently.

Very Special Kids supports families through bereavement for as long as they require our services, to help us continue to support families like the Patty family, you can donate online here.

Actions speak louder than words

11-year-old Nate Giddens, loves being in the water, music and going to school. His mum Beck, says that he has quite the personality, and that she often catches him rolling his eyes at her if he thinks she’s being embarrassing.

But throughout his life, Nate has had constant health complications so requires 24-hour care for his basic needs.

Nate has Lissencephaly which means he has uncontrolled seizures. He is nonverbal, has no head control, cannot walk and has trouble sucking and swallowing.

With Nate often in and out of hospital, mum Beck says that the family focusses on enjoying each day.

When they returned home after his diagnosis as a baby, “I was horrified to think my child was going to die in two years,” said Beck.

But 11 years on, “we take it day-by-day. To me I think he could go another 10 years but you hear of these kids passing in their sleep. His heart could literally just stop, it has its own brain, it could happen at any time,” explained Beck.

The Giddens family turned to Very Special Kids for Nate’s respite care at the Hospice and for emotional support.

Beck said that having access to Very Special Kids Hospice makes everything easier and it’s always great to see the familiar faces.

Nate stayed for 16 days when the family went on a trip to America. “He loves it there and I feel very confident leaving Nate at the Hospice,” said Beck.

Beck talks to her dedicated Family Support Worker, Meg fairly often, “she’s been great, we have a lot in common, it’s so nice to know there’s easily accessible support,” she explained.

Nate’s older brother Jack, 13 has enjoyed attending the Very Special Kids Sibling Support Program.

“He’s missed out on having a brother and having fun with him, he’s missed out on quite a lot. It’s hard for him to watch other people with their healthy siblings,” said Beck.

To help us continue to children like Nate and his family, please text ‘PIGGY’ to 0455 021 021 to donate. Or you can donate online here.

Supporting Emma’s Brother Jarrod

Jarrod McKee is 14-year-old brother of very special child Emma McKee.

Jarrod is very protective of his sister Emma, who has Lennox Gastaut Syndrome, a rare form of uncontrolled epilepsy. He finds it extremely difficult to watch his sister struggle with seizures, which can sometimes happen up to 40 times per day.

“It affects me a lot of the time. It’s just a constant worry about when her next seizure will be, and when she does I find it so hard to stand there and watch it, I don’t like that there is nothing I can do to help” said Jarrod.

Jarrod attends Sibling Days and Camps at Very Special Kids, and he finds it really helpful as he doesn’t usually like to share exactly how he is feeling with his friends, “it’s great to be around people who are in the same boat as you, it’s just comforting to know you are not alone” he explained.

Recently Jarrod attended an adolescent camp with Very Special Kids and told the facilitator that “it was one of the greatest experiences of my life. It introduced me to new people I will remember forever and it allowed me to do things I never imagined to be able to.”

Jenny and Rodney McKee, Emma and Jarrod’s parents, are also very grateful that Jarrod can attend these special days and explain that “it’s a great opportunity for him to talk to people in similar situations and also just have a break and get away, we’re so focused on Emma sometimes we might miss certain things with Jarrod, so it’s good for him to go and socialise.”

Jarrod’s parents are also grateful for the break they get with him when Emma stays in our hospice, and explains that “it’s great to be able to take Jarrod on a holiday and do things that normal families might do.”

Although Emma may make life very unique for Jarrod, he is extremely caring and affectionate towards Emma, always keeping an eye on her every move.

“She’s like a cheeky cuddly cat, that’s a complete mixed bag. We often just sit together on the couch and cuddle, because besides that she really can’t do much else” explains Jarrod.

Very Special Kids Sibling Support Program aims to provide a supportive and safe environment where siblings can choose to give voice to their feelings. A therapeutic framework allows children to not only explore their emotions, but also enhances self-esteem, encourages peer support and reduces the sense of isolation often felt.

To help us continue to support siblings like Jarrod, please text ‘PIGGY’ to 0455 021 021 to donate to the Piggy Bank Appeal or you can also donate online here.

Coles supermarkets support Very Special Kids

We are excited to announce that Coles are supporting Very Special Kids through a two-week campaign in 167 Coles stores across Victoria and Tasmania.

From 6 – 19 September, Coles will be selling cute balloon donation cards for $2 each at the checkout and all proceeds will come directly to Very Special Kids.

Coles State General Manager Michael McKenzie said Coles is delighted to support such important services for families and children in need.

“Very Special Kids do an amazing job to help families and children facing very difficult circumstances. We hope we can make a real difference through our fundraising at Coles supermarkets across Victoria over the next two weeks”

We are extremely thankful for the generous support from organisations like Coles and the community. Without this support, we would not be able to continue providing respite and end-of-life care for children in need.

As vibrant as a Lilly

“Lilly was extremely vibrant, and she had an infectious giggle,” says Lilly’s mother, Sarah.

Lilly was born in December 2007 and she was the first daughter of Sarah and Liam Fish. Three years later they gave birth to Lilly’s best friend Zoe, now seven-years-old.

When Lilly was just four-years-old, she woke up one morning with a lump that had come out of nowhere, and the Fish family’s lives were changed forever. In February 2012, Lilly was diagnosed with a stage 1 Wilms Tumour, which is cancer in one kidney.

“We were on holiday when we found out and we went straight to the hospital and she had surgery to remove the tumour and then chemotherapy for 6 months. After that she was cancer free. But then she relapsed twice” explains Sarah.

Zoe was only 2 years old when her sister was diagnosed with cancer, but they were the best of friends.

“I couldn’t have wished for them to be any closer, they did everything together.”

Very Special Kids began supporting the Fish family soon after the diagnosis of Lilly’s cancer. They were partnered with one of our family support practitioners, and she went to the family home to practice art therapy with both Zoe and Lilly.

“The art therapy that Mei did with the girls really helped us through difficult times. It offered us an insight into the girls world and showed us they were resilient, it was priceless” said Sarah.

Lilly died at home in July 2014.

Zoe will now get to keep the art she did with her sister forever, and it helped her through a process that is difficult for anyone to go through, let alone a four-year-old.

“She was crushed, she was really aware of what was going on, we explained it to her in simple terms, but her best friend was gone so she was devastated.”

Zoe now attends every Bereaved Sibling Day that Very Special Kids holds and she always asks her mum when they are coming up next.

“She absolutely loves them. They always seem to come around just when she needs them, and she’s starting to make friends and see familiar faces too. After the last one she told me she had ran into a boy that had lost his older sister just like her. We think they’re invaluable” said Sarah.

Last year Zoe became an older sister as the Fish family welcomed Roland into their family, now nine-months-old. Sarah stays in regular contact with Mei, and says her “support is really good, she was fantastic through it all. She is always there to offer guidance and support when we need it.”

The Fish family still incorporate Lilly into everything they do, and make sure they talk about her often, in order to keep her vibrant spirit alive.

Very Special Kids supports families through bereavement for as long as they require our services, to help us continue to support families like the Fish family, you can donate online.

The Pantry Party raises $47,000!

In its third year running, The Pantry Party proved to be another thriving success raising $47,000 for Very Special Kids in support of the Piggy Bank Appeal.

It was an action-packed morning with a number of children’s activities, games, entertainment and special guests such as Matt Tilley as MC, Shane Crawford, Bugs Bunny, Tweety Bird and a number of other celebrities and sporting stars.

Owner of The Pantry restaurant Guy Mainwaring and his family experienced first-hand the support offered by Very Special Kids, nursing his son Gus during a very difficult time.

Gus was diagnosed with Battens Disease when he was four years old. The disease affected both his mental and physical development as well as causing seizures.

Gus passed away a year later (2014) at Very Special Kids Hospice and since then the family have continued to be supported through Very Special Kids Bereavement Program as well as Sibling Support services for their ten-year-old daughter Lottie.

On behalf of the team at Very Special Kids, we would like to say a huge thank you to Guy and his family, all volunteers and everyone involved in making the Pantry Party such a fantastic morning.

If you would like to donate to the Piggy Bank Appeal text LOVE to 0455 021 021 or you can donate online.

The look of love this Father’s Day

Four-year-old Harry has been given a second chance in life thanks to his father, Trevor. Harry received his dad’s kidney last week, a life-saving and selfless gift that encapsulates the loving bond between father and son.

Little Harry is always smiling and laughing, has a wicked sense of humour and energetic curiosity much like any other child his age but he’s had a remarkably tough short life to date.

Born 32 weeks premature with breathing issues he went on to have nine surgeries within the first six months of his life because his bladder flooded in utero. The immense number of surgeries meant he had to be on life support to allow his little body to rest during these periods.

Harry was diagnosed with a posterior urethral valve, a blockage that hinders urination, resulting in organ damage so his parents knew he would eventually need a new kidney. His illness meant he woke each day with flu-like symptoms and was itchy all over. In addition to this discomfort he was also tethered to a dialysis machine 12-hours a night so a quality nights sleep frequently eluded him.

The family were at the point where they would try anything to help their little boy get better. Harry’s genetic makeup made him a tricky match for an organ donation so he spent nearly four years on the organ donor waiting list. When Trevor discovered he was an eligible donor he was elated, despite knowing that losing his kidney would change his life drastically.

Due to Harry’s high number of surgeries from birth for his condition, a transplant much earlier than now hasn’t been an option. His tiny body needed the time to rest and recover so that it had every chance of accepting the organ from his dad.

Harry is under no illusion about where his new organ came from, “you made it for me,” he says, pointing to his dad’s abdomen.

“He doesn’t owe me anything. We owe him everything,” Trevor said.

Harry’s mum, Eileen knows that the new kidney from his dad will give him the energy he needs to grow and play, and “Trevor and I wanted that for Harry more than anything,” she said.

Harry’s older brothers, Tom and Jake, have also been impacted upon by Harry’s medical needs. Not only have they seen the discomfort of their younger brother first hand, they’ve also been limited by what they can do together as a family due to the restrictions of being on the organ donor registry. The family will now be free to go on a family holiday without the necessity for a contingency plan to reach the nearest hospital in an emergency.

Eileen is emphatic in her belief that the support of Very Special Kids these years has got the family through some of their darkest moments. Eileen says she is particularly grateful for their Family Support Worker, Peggy.

“Initially it was really hard for me as I find it hard accepting help but Peggy helped me break down these barriers and know that it’s ok to ask for help. She’s been amazing,” she said.

Eileen also attends Very Special Kids coffee mornings and says “it’s important to debrief with other families in a similar situation. I can’t speak highly enough of this support.”

The Booth family’s display of unconditional love and promise of a better life for Harry is a true inspiration to everyone at Very Special Kids.