Monthly Archives: April 2022

Ruby’s story

Written by Shari Gotch

Ruby’s story is filled with love, courage, bravery, and so much hope. Our story doesn’t have a happy ending, but it is a remarkable story and I feel fortunate to be sharing my journey and our connection with Very Special Kids.

In 2013, I was pregnant with my third child, it was a healthy pregnancy and no different to the birth of my two other children, Harry and Charlie. When Ruby entered the world at the Epworth Freemasons Hospital in the very early hours of 1 March 2013, she was very calm and placid. We weren’t sure if that was due to her being the third child or perfect daughter.

In her first 24 hours, Ruby had a massive seizure and was quickly transferred to the neonatal intensive care unit (NICU) at the nursing hospital. It was a challenging time. I had just given birth and next thing we knew our baby needed to be taken to another hospital without us.

Ruby underwent extensive testing to find out what caused her seizure, but the doctors couldn’t find any answers. It wasn’t until two weeks before she passed that Ruby would be diagnosed with a rare genetic condition called DOOR syndrome.

When we took our little girl home, we continued to question that one off seizure. We lived on a farm in regional Victoria and travelled to The Royal Children’s Hospital (RCH) to hopefully find some answers. In her first admission, Ruby stayed for five weeks. We discovered she had a profound bilateral hearing loss and would require medication to manage her condition and seizures.

As months passed, Ruby’s seizures continued. Her developmental delays were more prominent, as she didn’t reach the sitting up and rolling milestones, and her feeding became weaker. She was admitted to hospital a few more times, then, at nine months old, an uncontrollable 16-hour long seizure, put her on life-support in the Intensive Care Unit. Then we were told the words that is every parent’s worst nightmare, “We can’t try anything else; this is it.”

This is when Brad and I were referred to Very Special Kids. We were living 24/7 at the hospital, so our Melbourne based Family Support Practitioner would visit us there. With his support, we discussed how we were going to tell our other children that Ruby was dying. Even as a couple, it was difficult to navigate and decide Ruby’s end-of-life care.

When we learnt about the children’s hospice at Very Special Kids, we met with the staff and just knew this was the right place for Ruby. They had 24-hour nursing care and a little house on site for us to stay. Anyone who has little kids will understand having a two and three-year-old in ICU is your worst nightmare. There are chords everywhere and it’s really intense. We wanted a space where the five of us could just be together and enjoy our time with Ruby.

When we arrived and Ruby’s life-support was removed, we weren’t sure what to expect. We were prepared that once they take the tubes out, that she may not breathe, and it could happen quickly. But somehow, our little girl kept breathing on her own, which was amazing. During that time, the five of us slept in one bed all together and it was just magical. It’s something I’ll never forget.

After several days, Ruby was comfortable, still breathing and still able to feed. The Christmas holidays were around the corner, and Brad and I had a crazy idea, to give our family a beach holiday down on the Mornington Peninsula. It was a brave decision, but one we will never regret. Our three kids got to enjoy one family holiday altogether, which was amazing.

We went home to Echuca for Christmas and Ruby spent time with her brothers snuggling up on the couch. It was a very special time to remember. In her final days, Ruby celebrated her first Christmas, and she took her final breath on 27 December 2013, with us all at home. I believe she knew to get through Christmas, especially for her big brothers. She was stoic and fought for her life. And she continued her brave battle right to the very end. She was nothing short of remarkable.

While Very Special Kids is not the group that you would choose to be part of, if you end up in that club, the level of support and services is second to none. Their Bereaved Parent Program is exceptional. The one thing that I love about Very Special Kids is that it not only offers support for your child with a life-limiting condition, but also for siblings and parents. Harry and Charlie have been involved in so many things and had so many opportunities as part of the sibling program, and that’s been important for them. We are eight years down the track, and still connected.

Living in regional Victoria can be really challenging to access services. So, it is amazing that Very Special Kids can reach families here in regional Victoria. I had no idea how many other families around us are using the same services, so we’ve met some wonderful families who are travelling on a similar journey to ours.

Although Ruby is not with us today, I know she is still reaching the hearts of many people and I feel unbelievably proud and honoured to be continuing her legacy.

Running for Monique

An ‘angel on earth’ is how Danielle would describe her late daughter.

“She didn’t become an angel. She always was one. Monique taught us so much in her short life, and we are just trying to carry on the good she left behind.”

A week before her fourth birthday, Monique was diagnosed with diffuse intrinsic pontine giloma (DIPG), an aggressive childhood brain tumour that develops in the brainstem, affecting the nervous system.

“Monique was always a very bubbly little girl. Her sisters would always call her the ‘queen of the house’ – a bit bossy, but very loving and caring. For a little person, she had a big personality,” shares Danielle.

“It was horrible to see what this tumor was doing to her and her body. It took away all those things. She was still there at the end, but she couldn’t walk, she couldn’t talk. It was just horrible to watch.”

Monique died 13 months after she was diagnosed, leaving behind her loving parents, twin sister Zoe and older sister Olivia.

Six years on, Monique’s family still spend every day remembering their vibrant, confident, and loving daughter.

“Grief doesn’t just end, it is ongoing,” shares Danielle. “Sometimes fundraising for Monique can be sad and stir up those emotions. But participating as a family really highlights how beautiful and special, she is to us.”

The family have decided to honour their daughter’s memory by taking part in Run Melbourne this year, raising vital funds for the children and families supported by Very Special Kids.

“We fundraise for those who have helped us, and I truly believe what goes around comes around. When Monique passed away the care from the hospital and the palliative care team suddenly ended. Thanks to Very Special Kids we didn’t feel so alone, they were there to pick up the pieces.”

DIPG is known as one of the most deadly childhood cancers. They were devastated to be told there is nothing they could do for Monique.

“This is one of the worst tumors, and unfortunately there is no chemo, there is nothing. We just went into shock. I was sitting there shaking. I just couldn’t believe what was happening.”

Danielle and Darryl were referred to Very Special Kids by The Royal Children’s Hospital, Melbourne. Their Family Support Practitioner, Jenni, was based locally, making it easier for the Lockington based family to have regular visits.

“I don’t know where we would be without Jenni. I can’t speak any higher of the love and support Very Special Kids give to each and every family across Victoria.”

“I remember Jenni coming to our house and meeting Monique and the girls. It was nice to speak to someone that just got it.”

Jenni was there for the family during Monique’s final days, helping Danielle and Darryl navigate difficult conversations with Zoe and Olivia, while they tried to cope with their own grief.

“We didn’t want to upset the girls in the early stages. But when it got towards Monique’s end of life, we had to have that conversation with them. It was good to have Jenni there to help prepare the girls and better understand what was happening. She gave us lots of resources, books, and craft activities to help them with their grief.”

Now, the family honour Monique’s life in many ways, running a Pink Day – Monique’s favourite colour – at her school and other fundraising events that can help to raise awareness of DIPG and other life-limiting illnesses that impact children and families across Victoria.

“The more noise you make, the more you will be heard. So, we just keep battling on. It’s exactly what Monique did, and I promised her I would never give up.”

“I feel so privileged to still be able to tell her story, almost six years on. It warms my heart that people still speak of Monique’s name. She’s not forgotten about, she lives on through our fundraising and memories.”

Danielle is participating in the Nike Melbourne Marathon Festival in memory of Monique – so other children and families can receive the emotional, clinical and practical support they need to navigate childhood life-limiting illness.

Help families like Monique’s by supporting Team Very Special Kids at the Nike Melbourne Marathon Festival on Sunday 2 October.

A Very Special Youth Program

On Thursday 7 April, Very Special Kids first ever Youth Advisory Group (YAG) met over zoom and set the wheels in motion for generational change and innovation to take place!

The group is made up of eight enthusiastic, motivated, and inspiring young adult and adolescent siblings eager to express their thoughts and ideas in bold, creative ways.

We asked our Youth Advisory Group what they were feeling most inspired by after their first session together.

“I am inspired by my fellow group members and how we have all gone through really difficult circumstances but we can work together to positively impact the lives of other young people. I just think that it is really beautiful.”

“After the first meeting I was really inspired by everyone’s ideas and excited to see what we do together in the future.”

“I’m feeling inspired to assist young people in finding their voice.”

“Inspiring to see proper and thorough interaction.”

“I’m inspired knowing I have this opportunity to help others and give back to an organisation that has helped me so much.”

“I’m inspired by the nostalgia the connection to Very Special Kids siblings has ignited in me”

“I’m inspired to bounce ideas off others, to make Very Special Kids more accessible, to improve communication and program diversity”

Very Special Kids believes that young people have the right to participate in decisions that affect them. By creating collaborative partnerships with young people, we aim to empower them to share their expertise to help us strengthen our services and improve access to a diverse range of programs.

It is our belief that initiatives designed for children and young people by children and young people are far more effective and likely to succeed. We cannot wait to see what the future holds at Very Special Kids, thanks to the invaluable contributions of these extraordinary young people…watch this space!

YAG has been made possible thanks to the generous contribution of Freemasons Foundation, who donated $50,000 to empower Very Special Kids youth to achieve their dreams.

Rodney Lavin, Chairman, Freemasons Foundation Victoria shares; “As another tumultuous year draws to a close, we are proud to be announcing funding for some incredibly valuable projects that promise to benefit the Victorian community. These grants will support charities to help those in need or empower the youth of Victoria to achieve their dreams.”

Lego Building Sibling Day

Siblings gathered together at Galada Community Centre in Epping for a Lego themed day building blocks and connections.

The kids got creative, designing their very own masterpiece replica lego clay figurines, and enjoying some lego themed colouring in. After a delicious pizza lunch, Bricks 4 Kidz delivered a hands on lesson, so everyone could maximise their day and learn some important co-operation and teamwork skills. They were taught different techniques including; 3D lego, mosaic lego and technic lego. The latter being the most popular, as teams worked together to create battery powered merry-go-rounds.

Days like this Sibling Day aim to support children who have a brother or sister with a life-limiting condition, or who has died. It offers kids who may be experiencing a sense of isolation, a safe space to feel understood and meet other children supported by Very Special Kids. One sibling shared,

‘I like coming to meet other kids and I love playing with lego’

Parents shared their excitement to see the return of Sibling Day programs, and the positive impact and joy it brings to their children’s lives.

‘It is so nice to see her smiling and being around other kids that just get it’

‘Thank you for having her she had a really good time and enjoyed herself’

Glen Osmond Farm Woodend Family Day

The sun was shining, kangaroos hopping and lots of excited families joined us for a fun day on the property of Glen Osmond Farm in Woodend. Glen Osmond Farm is located in the gorgeous Shire of Macedon Ranges on a property that Very Special Kids access for family holidays. The kids had fun roaming the grounds, getting their face painted and creating their own musical instruments to perform in the barn with our Allied Health Team.

Special thank you to Woodend Rotary for serving up a BBQ lunch, Here or There Coffee Caravan for providing coffee and tea to families and Jazz Pianist, Barney McAll for keeping families entertained through out the day. We would also like to thank our wonderful face painters, Pass the Parcel and Kyneton Equipment and Party Hire for making the day more enjoyable for every family.

Thanks to the generosity of Janet and Bernie Hawkins, Glen Osmond Farm has provided families with a relaxing break at a peaceful farm just outside the township of Woodend for seven years. The purpose built, fully accessible farm continues to foster positive memories for children, young people and families across Victoria. The farm features two holiday cottages that can sleep up to eight people in three bedrooms, as well as a big barn for entertainment and amazing views across to Mount Macedon. And best of all, there is no charge for families to use the cottages thanks to the ongoing support from across the community. Special thank you to Joe Mediero, Ron Howard and Tania Howard for maintaining the property.

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