“You gifted our family with a wonderful first Christmas together in Australia we’ll cherish forever. We wish our Felix could have been here with us to enjoy all the fun things the ‘Laklinyeri’ Beach House has to offer,” Rebecca Self said.

When the concept of the ‘Laklinyeri’ Beach House was created it was always imagined the house would welcome families with children in palliative care or with complex medical needs.

However, the need for a special space where bereaved families could continue to grieve and heal was also identified. With its light-filled design and tranquil setting, the Beach House is an oasis for these beautiful families.

Donations made to the WCH Foundation fund family stays. We work closely with the families to create bespoke holidays to meet their wishes and needs.

Over Christmas 2020, Rebecca and Jamie, their son Liam, and extended family, stayed at the House.

Remembering Felix

Like many school leavers dream of doing, Rebecca started travelling the world at 19. She spent the last 15 years in Canada where she met Jamie and Liam was born.

Last year the family moved to Adelaide and Rebecca discovered she was pregnant shortly after.

“We did a Harmony Test and found out we were at high risk for Down syndrome. We were under the care of Maternal Fetal Medicine at Flinders at this stage,” Rebecca said.

“At my 28-week ultrasound they discovered our baby boy had a lot of fluid around his heart, lungs and under his skin. My doctor said, ‘I’m going to send this to some colleagues at the Women’s and Children’s and they’ll probably be in contact in a couple of days’. But they called me that afternoon and said, ‘You need to come and be admitted right now’.”

A couple of days later Felix was born on July 31 by C-Section. He went straight into the WCH’s Neonatal Intensive Care Unit and heartbreakingly passed away seven weeks later.

“It’s like we went through this really intense experience and then it was over. Some days it feels like it was a complete dream. He never came home with us and we never got to experience day-to-day home life with him. Some days it just feels like it didn’t happen at all and other days my emotions are really intense,” Rebecca said.

A few weeks after Felix’s death, Rebecca received a package from the Hospital’s Palliative Care Service with a note telling her about the Beach House. She applied to stay.

Liam and Rebecca are pictured at the Urimbirra Wildlife Park. Photo credit: Kate Elmes. 

Christmas at the ‘Laklinyeri’ Beach House

“Our time at the Beach House was the first time we had stopped together as a family and spent quality time together since Felix’s death,” Rebecca said.

“The House is so much more than just walls, windows, beds and toys – it’s a place of memories, peace and joy.

“The way the home is laid out allows all the light to come in. Especially on a beautiful summer’s day, it is soul-renewing.

“The home and being on the lake are so quiet and tranquil. I had moments of opportunity to sit out on the deck with a cup of tea and just be, or just sit back watching the kids explore the house, or explore the yard, or play in the cubby house. These are all the things we don’t have at home.”

Rebecca and her family recognised the purpose-built nature of the Beach House.

“We got a true sense of what a blessing the home would be for other families. We didn’t have a need for all of the hydraulic lifts, and the bathtub and the medical equipment, but when you’re there you totally understand just how amazing it would be for a family who needed it.”

Rebecca expressed her appreciation and gratitude for the opportunity to stay at the Beach House.

“Thank you for allowing us some time together to rest, to have fun and to heal a little. We’ve cherished our time here and we hope many families will continue to enjoy it in the future. Thank you for all you have given our family,” she said.

Liam and Jamie enjoying Urimbirra Wildlife Park. Photo credit: Kate Elmes. 

“All the kids were together, dancing around and having a good time. Declan was never left out and was always included,” Keira said of her family’s Christmas in their hometown of Port Lincoln.

Keira and her partner Bobby Lovett, bravely shared the story of their sons, Connor and Declan, for the WCH Foundation’s 2020 Christmas appeal. The appeal raised funds to support families like theirs whose children are in palliative care at the Women’s and Children’s Hospital.

At just three-years-old Declan was diagnosed with leukodystrophy, an incurable neurological disorder that affects the central nervous system. His older brother Connor was diagnosed with the same condition just months later. Leukodystrophy impacts on every aspect of the boys’ lives, including their speech, hearing, and walking.

Christmas 2020

Over Christmas Declan first suffered a stomach bug and an ear bleed which saw the family visit the Women’s and Children’s Hospital Emergency Department.

Kiera said other than these minor health issues the brothers’ health was actually really good and they had a wonderful Christmas.

The Lovett family visiting Santa at Christmas.

Christmas started early with a $300 voucher gifted to the family from Big W, a WCH Foundation corporate partner.

“Connor, Deccie and Evie-Lee all loved going to the store and choosing whatever they liked. They all chose a Diana and Roma doll.”

The family then headed back to Port Lincoln to spend time with family over the holidays which Keira described as feeling like “a big weight lifted off our shoulders when we got back”.

“As soon as we got to Port Lincoln, Connor just clicked and he was a different person, he was so much calmer. Declan was so much happier as well; we all were I think,” she said.

“My favourite memory was seeing the boys have an absolute blast with their relatives. On New Year’s Eve, Declan was sitting on his aunt’s lap and dancing by throwing his arms around in the air. I sat back, watching him, thinking he is having an absolute ball.

“His cousins would also push him around in a cart in the backyard. They always included Declan and had a great time.”

The year ahead for the Lovett brothers

Now it’s back to reality and the school year has started for the boys. Connor is heading into year three and Declan into year one.

Declan and Connor ready for their first day back at school with their sister Evie-lee.

“Declan is excited to be back at school, but Connor is a bit anxious,” Kiera said.

“Connor has declined quite rapidly with his walking and he’s very self-conscious about it.

“He knew he could do it before and now he can’t do it. He worries about what people are going to think.”

The services available to Connor at school will be expanded this year, with another SSO joining his support network.

Kiera hopes with some encouragement from Connor’s SSOs he will start venturing outside more at recess and lunch to explore the school yard, dig in the sandpit and kick a ball with his friends.

“I think this will boost his confidence, keep his muscles going and help stop his busy mind from stressing about every day life,” Kiera said.

In the coming month the boys will be back at the Hospital for a few appointments. This includes Botox in February to alleviate leg pain, ENT and neurology appointments. These appointments are co-ordinated by their palliative care nurse Danni.

Support for the Lovetts

The support the Lovett’s have received over social media since the Christmas appeal last year has been overwhelming.

Keira has received numerous messages of support in her inbox in the past few months, some connecting her to other families who have gone, or are going through, similar journeys.

One connection is Cheryl Minniss whose son Mason had a similar condition to Connor and Declan. Cheryl set up The Mason Minniss Fund in honour of her son and is a good friend of the WCH Foundation.

In the early days of the Lovett’s hospital visits the Fund donated a gift card to the family. The Christmas appeal has reconnected the two mums again.

“Cheryl is lovely and she’s provided me with support and advice over the past couple of months,” Kiera said.

Every year more than 1200 families, like the Bocks, rely on equipment from the Home Equipment Centre to enable their children to be cared for at home rather than in the Hospital.

Thanks to the support of five WCH Foundation corporate donors; The Lott by SA Lotteries, Sodexo, Curing Homesickness, Coles, and the SA Power Networks Employee Foundation, the Centre has relocated to a refurbished and larger premise.

Fourteen-month-old Amelia Bock was born at 35 weeks at North Adelaide Calvary. Her mum Amanda said Amelia was in foetal distress at birth and had to be rushed to the Women’s and Children’s Hospital.

“It was pretty traumatic at the time. She spent some time in the Neonatal Intensive Care Unit and later was diagnosed with an extremely rare chromosome disorder. This led to a diagnosis of central and obstructive sleep apnea, which is why she requires oxygen, and an unsafe swallow so she is fed through a feeding tube. She was diagnosed at about three-months-old and that is when our relationship with the staff at the Home Equipment Centre began. We are here multiple times a month,” Amanda said.

Equipment Amelia requires from the Centre includes oxygen tubes, replacement buttons for the feeding tube, extension tubes, syringes, IV sponges and adhesive remover wipes.

“This equipment means she can stay healthy and meet her milestones, and we can manage Amelia’s condition at home instead of being in hospital, which means less admissions for us, so that’s fantastic.’’

Amelia Bock who requires equipment from the Home Equipment Centre.

The Home Equipment Centre’s new location, at the entrance to the Samuel Way Building, is more convenient for families to access compared to the former location within the Paediatric Outpatients Department. Parking for families utilising the service is now also within metres of the Centre in Brougham Place.

Women’s and Children’s Health Network Nursing Director of Disability and Complex Care, Jodie-Ann Hochuli, said the Centre supplies important equipment to patients so they can be cared for in the comfort of their own home.

“The Home Equipment Centre at the Women’s and Children’s Hospital ensures women, babies, children and young people continue to receive high quality care even after they have left the hospital,” Ms Hochuli said.

“The new location provides enhanced storage and greater accessibility for families, allowing them to easily park and access what they need without having to walk through the Hospital.

“I would like to thank the WCH Foundation and its corporate partners for making the relocation and refurbishment of this vital service possible.”

Amanda and Amelia Bock outside the new Home Equipment Centre near Brougham Place.

WCH Foundation CEO Jane Scotcher said the charity was incredibly proud to be supporting the redevelopment of this vital service.

“We are very grateful for the generous support of our corporate partners The Lott by SA Lotteries, Sodexo, Curing Homesickness, Coles, and the SA Power Networks Employee Foundation to help make this a reality,” Ms Scotcher said.

“Having access to loan or to buy medical equipment through the Home Equipment Centre means patients can go home sooner and live their lives outside the walls of the Hospital.’’

On the completion of the Home Equipment Centre project, The Lott by SA Lotteries has donated a further $50,000 in support of the Hospital and SA Power Networks Employee Foundation has donated $35,000 towards equipment.

The new Home Equipment Centre has increased in size from the previous site.

From drawing on the Play Deck’s windows with paint pens, to creating art with unique paint machines and listening to groovy tunes, the WCH Foundation’s pARTy Week was a huge success.

Held from 21-25 September 2020, pARTy Week was a key event in our 10 years of Arts in Health celebrations.

Each day a different South Australian visual artist and musician brought their talents into the Hospital. Patients, their family, and staff were invited to experience the interactive art activities while enjoying the music.

Leo and his dad Dave enjoyed all the pARTy Week activities, especially painting with Carrie Radzevicius. While pARTy Week was planned to be held on the Play Deck, the wet weather meant some activities were brought onto the wards and to Hospital School.

Patient and family feedback

The Trumbull family – Dave, Kate and their son Leo took part in every day of pARTy Week. Leo has appointments to the Hospital about four times a year, but his most recent stay was for two weeks.

Dave and Leo particularly loved Thursday’s line-up of activities – painting with trucks with artist Carrie Radzevicius and blues music by Cal Williams Jr and WCH nurse Korey.

“When I first saw the flyer about pARTy Week, I thought ‘fantastic’ these activities are something we will be able to build our day around. Having the activities every day broke the monotony of being in hospital and being in Leo’s room,” Dave said.

Leo, nine years old, said his highlight was “the messy painting” with Carrie as it was fun and “made him feel free”.

Kate said, “Leo loves arts and crafts so it was great he could spend time doing something he loves while being in Hospital.”

Ngarrindjeri artist Cedric Varcoe and WCH patient Des created a community art piece.

pARTy Week highlights

WCH Foundation Arts in Health staff Jill Newman and Lauren Simeoni organised pARTy Week. They have shared their favourite moments.

‘’I accompanied Ilona the harpist while she was playing in the day surgery waiting room,” Jill said.

“This is an area where children fast – no food or drink – which can be very difficult especially for young ones. To prep for the surgery, a number of clinicians meet with the parents and children in the waiting area outlining the final details, so it is a nervous time for parents especially if it is their child’s first surgery. Staff said the music created a calming mood, which helped reduce the stress for parents and children. They also said the harp was an interesting instrument to look at and many patients would not have seen one up close before.”

Lauren’s highlight came from the final day of pARTy Week.

“Des had been in the Hospital for an extended stay and he had been away from his family as they live interstate. On Friday Des had the opportunity to come down from his ward and take part in traditional painting with Ngarrindjeri artist Cedric Varcoe. It was a special time for Des to spend one-on-one time with Cedric and to explore Aboriginal art together,” Lauren said.

WCH play therapist Amanda with patient Milania receiving her Activity Pack thanks to Subway.

Activity Pack delivery

The WCH Foundation Arts in Health program helps to relieve the stress and anxiety patients may feel while being in Hospital and highlights the role the arts can have alongside clinical health care. The comments from Leo, his parents, and Jill and Lauren truly demonstrate this.

To complete the 10 years of Arts in Health celebrations, the WCH Foundation delivered hundreds of activity packs to patients in the Hospital. Our friends at Subway made this delivery possible.

In early April, as Australians were experiencing the first COVID-19 lockdown and cases were on the rise, the WCH Foundation announced it would support a local collaborative project to research the deadly virus.

The initial collaboration between South Australian virologists, immunologists, and clinicians, has since grown to a national partnership with Victoria’s Monash University and the Kirby Institute in New South Wales.

Eighty South Australians, who have recovered from COVID-19, have volunteered to be involved with their blood samples already collected. Teaming up with Monash and Kirby means local researchers have access to a larger patient pool including pregnant women and children. Interstate researchers have access to SA’s samples and technologies.

Professor Simon Barry, Dr Branka Grubor-Bauk from The University of Adelaide and Basil Hetzel Institute, and Associate Professor Michael Beard. Pictured in April at the announcement of the research.

To share the progress of the research, we’ve chatted with Immunologist, Professor Simon Barry, from the Women’s and Children’s Health Network, who is a lead researcher in the project.

What are you researching and how?

Importantly, the project group has expanded. However, the goal of the research remains the same – investigate the immune system of recovered COVID-19 patients to see exactly how the immune system recovers from the infection and test the robustness of immunological memory, so if they’re exposed to the virus again we can predict the severity of the disease earlier and treat more effectively. We also hope to gain insight into how this response can be boosted.

We take blood and saliva samples at 4, 8, 12 and 24 weeks after the patient has been infected with COVID-19 and challenge those blood samples with a mimic of the virus. This provides a snapshot of what their immune system looks like when exposed to the virus again at different times. The results show whether there is a response from the patient’s white blood cells (T-Cells). We are asking are they still able to fight the virus? Their antibody response is also investigated.

The project will involve patients for the next three years.

What are the results?

The results are in-line with those seen worldwide. The antibody quantity appears to go down over time.

For some patients their antibody level is staying level. We then look at what is it about this patient that meant their response stayed level.

This is where we are getting to the specifics of how the immune system sees the virus.

What are the next steps?

We are now poised to take apart South Australia’s immune response and relate it to severity of symptoms to see if it’s true that the people who had mild symptoms have the best antibody and T-Cell response. Or if it’s not about that at all.

In most cases children and young adults are asymptomatic. The younger age group is informing what the milder response looks like. If we can replicate that in the older age groups, they may not experience as severe symptoms in the future.

All of this work is improving the world’s understanding of COVID-19.

Professor Barry thanked the generous WCH Foundation community for enabling this important research project to take place.

Our annual Super Dad campaign once again truly moved the staff at the Women’s & Children’s Hospital Foundation and Charlesworth Nuts. More than 100 people sent in nominations for the Super Dad in their life. All shared stories of Super Dads who provide love and support for their families.

Many of these families face battles most of us could not conceive and throughout their Super Dads show incredible strength. They are inspirational.

All have won a Presidential Hamper valued at $99 each thanks to Charlesworth Nuts.

Meet Brett, nominated by a group of his close mates. This is one of the nominations received!

Brett is a dad like no other. As the father of two beautiful girls Brett has faced battles most of us could not imagine. Diagnosed with testicular cancer in 2007, after the fight of his life, Brett recovered.

A 100% positive approach to life saw Brett recover from his own cancer only to be faced with an even bigger challenge. His amazing wife was too suffering her own health problems after a kidney transplant failed after 10 years. This left her requiring dialysis. Brett rose to the challenge, seeking basic nursing training which enables him to administer the dialysis in his own home every second night rather than trips to hospital. This provides his wife with the opportunity to be a ‘mum’ at home with some sense of normality.

All the while Brett fulfills the role of Super Dad, coaching the girls’ netball, taking them to school and working from home when necessary to help his beautiful wife.

Brett epitomises what it means to be a dad, not only for his kids but for his wife. Brett provides inspiration to so many people that know him, each of us recognising that whenever we are having a bad day, this guy is doing it even tougher… Charlesworth Nuts for a Super Dad, well – we would be nuts if he didn’t win!

Meet David, nominated by his wife Naomi.

The first couple of months were very intense, our son had severe posterior fossa syndrome. He would thrash around and scream out constantly, barely slept and was unaware of the world around him. There were moments it was hard to watch, but Dave never left Ty’s side.Once Tyler got to come home, Dave returned to full time work and still helped me once he got home every day. He was there to share the moment Tyler started talking again, four months after brain surgery.

Our gorgeous boy Tyler passed away just before Christmas last year, this will be Dave’s first Father’s Day without Tyler, who was his only child.Since December, Dave has helped me to keep Tyler’s memory alive at every opportunity we can.  He even helped me create a new garden, now known as Tyler’s Garden. It was hard work, but very worth it for both of us. It’s a happy place we can spend time in thinking of Tyler.

Meet Jason, nominated by his partner Sarah.

Where do I start!? Jeb (Jason) came into our lives just under five years ago. I was a single mum with five children, one with complex medical needs. Zackary my youngest has Treacher Collins syndrome. I was worried that Jeb would become too overwhelmed with the largely medical controlled lives we live but he took to Zack and my four others so well.

He was thrown in the deep end with Zack’s extensive stays in hospital, check-ups and helping me care for him. During a three month stay in hospital, Jeb was there by his side reading, colouring, playing, holding his hand and guiding him through the hard times.

Never once has he left my other children out or made them feel like they weren’t included. He has taken the time to understand them all and encourage them all individually to succeed in life, as well as be the positive happy dad role we all so badly needed. He is truly a Super Dad and a superhero to us.

Meet Dale, nominated by his daughter Kathryn.

I can’t drive as I have a brain condition and my mother is also fighting lymphoma and has weekly chemo. Public transport is also very difficult as Julian is immunosuppressed. So, who steps in to help with all our appointments and tests? My Super Dad! And Julian’s Super Papa!

My dad, Dale, has been amazing not only to me but has been a great father figure to my son his whole life.

Since the day Julian was born my dad has driven us to every single one of his hospital appointments, surgeries, blood tests, ultrasounds and scans. He’s driven in late at night to bring Julian’s special sleep toy when we have been admitted into the WCH.

He’s done multiple laps of the Hospital looking for the perfect vending machine that has Julian’s favourite drinks, all while also looking after my sick mum. Dad is 66 years old, ex Aussie army officer, father of four, papa of three and after how difficult the last few years have been for us, I would love to surprise him with being titled a Super Dad!

We wish all the dads in our community a very happy Father’s Day!

Super Dad is proudly supported by Charlesworth Nuts.

“We owe Chelsea’s life to the Hospital,” Matt Jones said.

Shannon and Matt Jones hadn’t planned for their first daughter to be born at the Women’s and Children’s Hospital. Eleven years on and the family is still eternally grateful for the care and support they received from the dedicated staff.

After a seemingly stress-free start to pregnancy, at 27 weeks – in the middle of the night – Shannon started to experience back pain. Matt drove her to their local hospital in the Barossa where the doctor told the young couple Shannon was in labour and she needed to go to the Women’s and Children’s Hospital by ambulance immediately.

“Without doubt, it was the most nerve-wracking drive of my life,” Matt, who travelled to the Hospital in his own car, said.

Doctors found Chelsea had her umbilical cord wrapped around her neck and Shannon went straight in for an emergency c-section.

“There were 10-plus doctors in the room when Chelsea was born, it was incredible. I still get emotional thinking about it,” Matt said.

Born weighing just 760 grams, Chelsea spent the first month of her life in Neonatal Intensive Care (NICU) and the next two in Special Care Baby Unit (SCBU).

Shannon with baby Chelsea in NICU, Chelsea and her sister Adele, and more recently Chelsea who is now 11-years-old.

Two and a half years later, the couple’s second daughter, Adele, was born at 36 weeks at the Lyell McEwin Hospital and the family once again needed SCBU. Fortunately, this time, they were only in for a few weeks.

Matt said Chelsea is now 11-years-old and is perfectly healthy, and his family owes it all to the nurses and doctors at the WCH.

“The more people you speak to about pregnancy and birth you learn it is very rare things go smoothly; we are just some of the lucky ones because Chelsea is 100% healthy,” Matt said.

“From our experience we wanted to make an ongoing contribution to the Hospital to show our appreciation. One of our family friends, Marco Cirillo, is a well-known winemaker from the Barossa, and from speaking with him the seed was planted that we could create Jones Family Wines.

“Our basket-pressed shiraz, the ‘Dura Via’, is the only variety created by Jones Family Wines and part proceeds from every bottle sold will be donated to the Women’s & Children’s Hospital Foundation.

“Dura Via is Latin for ‘hard road’ and the name highlights the rocky start to Chelsea’s life and how we travelled it together as a family. The map on the wine label traces the exact route I took to the Hospital on the day Chelsea was born.”

Proceeds will benefit projects in NICU and SCBU.

In July 2020, the Women’s & Children’s Hospital Foundation community is celebrating the first birthday of the ‘Laklinyeri’ Beach House

In the first year, more than 100 people have stayed at the extraordinary home.

The feedback we have received from the families is overwhelmingly positive – everything we hoped for and more.

In the video below, we are delighted to share beautiful photos of families who have stayed at the Beach House and their heartfelt remarks about their time.

To continue your support of families staying at the Beach House, click here

The ‘Gift a Butterfly’ Project is all about supporting women who have experienced a miscarriage.

“After doing some work around grief and miscarriage, I thought it would assist women if we offered them a keepsake to remember their lost pregnancy and help them to move forward. The butterfly is the universal symbol of pregnancy loss,” Angie Wilson, Antenatal and Gynaecology Ward Midwifery Unit Manager, said.

When a woman has a miscarriage at the Women’s and Children’s Hospital, they are offered a beautifully wrapped pack with a butterfly keepsake, flower seeds to plant in their garden to attract butterflies, and a poem.

“Often when women have a miscarriage, they don’t talk about it with their families and friends. But we know pregnancy loss is common and can cause significant distress, grief and loss. Sensitivity and acknowledgement of their loss, like we are creating through the Gift a Butterfly Project, can help women through this difficult time,” Angie said.

Butterflies are also placed outside of their hospital room to remind staff to be mindful of their interactions and how they communicate with women to ensure sensitivity.

Angie Wilson and her colleague Mel Graham. a midwife at the Hospital, have led the Gift a Butterfly Project.

The design of the butterfly keepsakes was part of a community engagement project between the Women’s and Children’s Hospital and Mitcham Girls School in Kingswood. Year seven and eight students designed and laser cut the butterflies as part of a STEM assignment. Adelaide business Trotec has recently created hundreds of butterflies free of cost for the project and Yates donated some of the seeds.

The WCH Foundation proudly supports the Gift a Butterfly Project, which has been led by Angie and her colleague Mel Graham – a midwife at the Hospital.

If you have experienced a miscarriage and would like support or to find out more about this project, contact the Women’s and Children’s Hospital Women’s Assessment Unit via 08 8161 7530.

Our corporate partners The Lott, Coles, SA Power Networks Employee Foundation and Sodexo generously donated to redevelop the Home Equipment Centre at the Women’s and Children’s Hospital, which is accessed by more than 1,200 patients and their families each year.

The equipment available includes oxygen concentrators, portable breathing machines and consumables – feeding tubes, syringes and dressings. Having access to loan or to buy medical equipment through the Centre means patients can go home sooner and live their lives outside the walls of the Hospital.

The redevelopment will see the size of the Centre increased and the location moved for greater accessibility for families.

Watch the video below to learn more about the Home Equipment Centre and the difference it makes to families who rely on it.