Self family at the ‘Laklinyeri’ Beach House

“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.

Mum and son.

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.

Dad and son with a koala.

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

Update on the Lovett brothers

“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 sitting across from Santa.

Declan, Evie-Lee and Connor Lovett visiting Santa.

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.

The Lovett family posing against a wall in their school uniforms before their first day of school for the year.

2020 vs 2021: Declan and Connor ready for their first day back at school with their little sister Evie-Lee. Look at how they’ve all grown in a year!

“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.

How to support your Hospital this Christmas

Christmas is a time for giving and the amazing South Australian public love to support children and families in the Women’s and Children’s Hospital at this time of year.

Here is your go-to guide on how to donate to the Women’s & Children’s Hospital Foundation (WCH Foundation) this Christmas 2020. 

From making a cash donation to purchasing a gift online, visiting your local Big W store to take part in the token campaign, or sending a virtual Christmas card, there are many ways you can support brilliant care in the Hospital and brighten the lives of patients and families.

If you have any questions, please call the WCH Foundation on 08 8464 7900.

🎁 Donate to our Christmas appeal

Two young boys in hospital.

Brothers Connor and Declan are palliative care patients in the Women’s and Children’s Hospital.

This Christmas, the Lovett family have bravely shared the story of their sons Connor and Declan.

Connor, 7, and Declan, 5, are both diagnosed with leukodystrophy, an incurable neurological disorder that affects the central nervous system. Both boys are under the care of the Palliative Care Service at the Women’s and Children’s Hospital.

Please watch their story here and donate today to support children like Connor and Declan every step of their hospital journey. 

🎁 Purchase a Christmas gift for a patient

You can help spread cheer and brighten the lives of children in the Women’s and Children’s Hospital this festive season by purchasing a gift for them through Simply Giving*.

Help us reach our goal of donating 200 toys this Christmas!

*Due to COVID-19 and infection prevention measures, we ask that everyone who would like to purchase gifts for patients in the Hospital do so via Simply Giving instead of dropping gifts to the WCH Foundation office. 

🎁 Big W instore tokens

Big W employees.

Big W stores in South Australia are supporting the WCH Foundation.

BIG W stores across Australia are raising money for sick kids this Christmas and South Australian stores are supporting the WCH Foundation!

The BIG W “Bring on the Love” token campaign is in stores now! You can show your support for the Hospital by purchasing a $2 or $5 token next time you visit BIG W between now and 24 December. To find your nearest Big W store, click here.

🎁 A t-shirt that looks and goes good!

Young boy smiling.

Young Adelaide boy Alfie has his Curing Homesickness tee on.

Clothing brand Assembly Label are supporting the Curing Homesickness initiative and the WCH Foundation with the launch of a limited-edition tee. 100% of the t-shirt sales donated to help get kids home from hospital sooner. Available from 23 November 2020 until stocks run out. Don’t miss this perfect Christmas gift that will look good and do good at the same time. Buy yours online now.

🎁 A personal message from Santa

Santa sitting on a chair.

Send a message from Santa!

You can make Christmas magic this year with a personal message from Santa to your loved one/s with Portable North Pole.

With your purchase of a video message or phone call from Santa, a portion of sales will be donated to the WCH Foundation. Click here to create your Christmas greeting!

🎁 IKEA toy drive

You can give the gift of play to a sick child this December by purchasing a cuddly toy or children’s book from IKEA. Simply pop your purchased item in the toy house located past the check out lanes in the Adelaide store. They will then be delivered to a patient in the Women’s and Children’s Hospital.

🎁 Virtual Christmas cards

Send a virtual Christmas card to your friends, family and colleagues this Christmas and 40 cents from every card purchased donated to the WCH Foundation.

WCH Foundation corporates support new Home Equipment Centre

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.

What a pARTy!

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.

Boy and dad enjoying art activity.

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.”

Aboriginal painting.

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.