Imagine spending every hour of the day knowing you need to keep a close eye on your child in case he stops breathing.
Then also imagine not knowing what his physical and mental development will be as he celebrates each birthday.

This is the reality for Jayne and Cory Mitchell and their baby boy, Elliott.

After having two healthy girls, Charlie (5) and Jemimah (3), Cory and Jayne Mitchell were surprised, but over-the-moon, to find out they would be having a baby boy. By the third pregnancy Jayne felt like a pro and imagined this time would be relatively normal and ‘easy’ having gone through two already.

That was until Elliott surprised them, again, by deciding it was time to enter the world nine weeks early.

The ‘normal’ life Jayne and Cory had known was thrown into the unknown from that moment on as, after a relatively normal pregnancy, Elliott was born by emergency c-section and rushed to another hospital where it was discovered something wasn’t quite normal. Elliott was struggling to breathe without support and, at a glance, doctors thought it was due to Elliott having a smaller jaw and larger tongue but as he, and his jaw, grew the breathing difficulty continued and specialists quickly uncovered he had a genetic disorder known as 22q11 deletion syndrome also known as DiGeorge Syndrome.

DiGeorge is caused by the deletion of a small segment of chromosome 22, and can result in the poor development of several bodily systems, and has no cure. But the discovery of the syndrome didn’t solve Elliott’s breathing difficulty so cameras were sent down into his respiratory system and that’s when Jayne and Cory learned Elliott has Tracheobronchomalacia.

Tracheobronchomalacia is a condition that causes the wall of the airways to become weak and in Elliott’s case, would require him to have a tracheostomy – a tube in the windpipe – in order to be able to breathe, be less dependent on equipment in order to continue to develop and grow physically and mentally.

“It was the trache that got us, having to put a hole in his throat. Being told he basically needed life-support to breathe was pretty full on but there was no other option,” says Jayne.

Now at 17-months, Elliott is sitting on the mild spectrum of DiGeorge, and both Jayne and Cory have been trained by The Royal Children’s Hospital to manage his developmental support and all the equipment he needs to keep him breathing. “He needs eyes on him all the time. At night, he’s got a monitor on him to track his breathing but that doesn’t mean we sleep, it’s a constant worry,” Jayne says.

It was the Royal Children’s Hospital complex care team who first told the Mitchells about Very Special Kids, as they could see the couple might benefit from its respite service for ongoing support and a much-needed break.

At a similar time to when the hospice nurses were being trained to provide the medical, ventilation and suction care, to respiratory patients, like Elliott, Cory was offered, and wondering how he could take on, an educational trip to the US.

With Cory away, Jayne would be left with the difficult task of managing two busy little girls under five and Elliott, who needs constant eyes on him.

That’s when Very Special Kids stepped in.

“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.

Elliott recently had another stay in the hospice giving Cory and Jayne a few nights away, as a couple, and they continue to be supported by their Very Special Kids family support practitioner, Damienne. “I don’t know how families survive without the hospice, it was a lifesaver, a god-send. 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.

The couple add that the hospice is more than just a physical building to them; “We can already see that Very Special Kids is very much a community and we are excited to be involved for many years to come.”

“My biggest hope for Elliott is that when he grows up, he sees his differences as beautiful and important, the biggest tragedy is that he might not ever see that. Very Special Kids is so important to us, we are now part of a community where children are different, but they are all included and celebrated,” Cory said.

To contribute to A Very Special Project, please click here.

We are so excited to officially announce that we are set to rebuild the hospice in February 2021, and today can confirm our capital fundraising campaign to raise the funds needs is underway.

With a big fundraising target of $22.5m to meet by the end of 2020, Very Special Kids Life Governor Andy Penn has been appointed to chair of the hospice rebuild capital fundraising campaign.

“The new hospice will be world-class with state-of-the-art and best practice clinical facilities to better support children of every age, size, nationality and functional capability. It will offer more specialised services for children as well as a semi-private space for adolescents to better respect their maturity and desire for independence. There will also be a dedicated area to allow for greater privacy and space to support a family’s final wishes for their child.”

“The wonderful thing about this project is you will be able to see the difference your donation is making; you will be able to see your investment in the bricks and mortar of a hospice that is completely unique in Australia,” he said.

Very Special Kids’ Chief Executive Officer, Michael Wasley, said the organisation has spent more than two years researching what makes the world’s best hospice.

“If the world was a fairer place, no child would be born with a life-limiting condition. Our families and children are facing some of the greatest challenges in life, but they are strong, resilient and inspirational to us. It’s now time to get it built and deliver our promise of building the world’s best children’s hospice,” he said.

The current hospice is set to be demolished in February 2021 and will be completely rebuilt to ensure it continues to provide the best level of care well into the future.

Very Special Kids secured $7.5m in Federal funding at the end of last year for the rebuild, with $15m needed to complete this critical Victorian community asset.

We would also like to acknowledge the Chain Reaction Challenge Foundation who was the catalyst partner of our hospice rebuild project and over the past three years has not only ensured the project is thoroughly planned and the outcome maximised but has also now contributed almost $1million towards the rebuild.

Life Governors Paula Fox AO and Connie Kimberley have been appointed Patrons of the capital appeal committee. Former Federal Cabinet Minister the Hon. Kelly O’Dwyer, businessmen Glenn Carmody and Neville Azzopardi, Very Special Kids CEO, Michael Wasley, Board Chairman Peter Polson, and Very Special Kids Founder and Patron, Sister Margaret Noone AM IVBM will also serve on the committee.

To make a contribution to A Very Special Project, please click here.

What inspired you to want to become a volunteer at Very Special Kids?

In Adelaide I volunteered at Ronald McDonald House on week-ends and when I returned to Melbourne I wanted to volunteer within the City of Stonnington.
I went to a presentation by various Charities organised by the council at the Stonnington Town Hall and VSK presented. It was their absolute dedication to the children and their families that inspired me. I was hooked and signed up that day!

Which volunteering role will you be doing and what will it involve?

I volunteer for the Footy Debate overseeing 3 tables and assisting with raffle tickets, prompting purchases of silent and main auction items and any questions the guests may have. The 24 Hour Treadmill Challenge I manage parking for the special guests. At Piggy Trails I sell merchandise and spruik the sale of BBQ sausages and explain about Very Special Kids. At the VRC Pin and Win selling the pins on various race days and I cap off the year off at the Fair supervising the front and back gates.

What do you do outside of volunteering at Very Special Kids?

I am a published author and my book is “From French Fries to a Franchise”. I enjoy going to the Melbourne Theatre Company, reading and going to movies.
I volunteer with Pet Medical Crisis and a beautiful rehoming charity called Bast Cat Club and I drive a veteran to the Anzac Day parade.

How does your background/job helping you with your volunteering role?

I was a McDonald’s Franchisee in Adelaide for 16 years and when I returned home to Melbourne I wanted to volunteer with sick children as I did with Ronald McDonald House in Adelaide.
I was on the board of RMHC and chair of the fundraising in South Australia to build the first RMH in Adelaide.

Why do you like to volunteer in general?

My Loreto education taught me to give back whenever possible and my Mum was on many charitable committees and always believed in keeping busy in all circles of life.

Do you have a special connection to Very Special Kids?

To meet and volunteer with the current Loreto students is most enjoyable.

What has stood out to you about Very Special Kids?

The respect I am given as a volunteer and I feel valued. I love catching up with the staff and other volunteers at VSK. It is very rewarding in so many ways. It is a privilege.