After moving to Adelaide from Sydney in 2015, Dilraj and his family quickly became familiar with the Women’s and Children’s Hospital.

16-year-old Dilraj has Duchenne Muscular Dystrophy, a severe type of muscular dystrophy, and is cared for by the Hospital.

His family found out about our Laklinyeri Beach House through a disability group they are a part of, and were keen to visit after hearing that it was a fully accessible holiday home – something that is a rarity for them.

Dilraj’s mum, Manpreet, explains, “Most places are not accessible for holidays, and if you do go for an accessible house, it’s very expensive. We can’t afford it. So we were very lucky to get into the Beach House.”

The Beach House in Victor Harbor is purpose-built and medically equipped for families of children in palliative care, or with complex medical needs.

Dilraj and his grandparents at the Beach House.

The size and layout of the house allowed the family to invite others to join them, including Dilraj’s grandparents, and a friend who also has Duchenne Muscular Dystrophy.

Despite visiting in summer, the group caught some bad weather but took the opportunity to make the most of the house, playing games and watching movies. The teenagers especially loved the excuse to video game.

In between the rain, they got out to experience Urimbirra Wildlife Park with the memory-making vouchers provided by HAS Foundation, and took a trip to the jetty.

The highlight of the trip though was just being able to get away to a place they knew Dilraj could fully enjoy.

Manpreet says, “Dilraj liked the room because it’s very big – he doesn’t have this much space at home!

“Most of all he liked the bathroom because everything is accessible.”

Dilraj with his dad, mum and sister in the Beach House cubby house.

12-year-old Charlie has congenital muscular dystrophy, scoliosis and hip dysplasia. For many children like Charlie who use wheelchairs for mobility, finding a place to stay for a family holiday that meets their needs can be challenging.

Charlie’s parents, Jodie and Steven, said, “We don’t plan many family holidays due to difficulty finding suitable and accessible accommodation. To have a house with everything supplied would be really welcome, and a much-needed break for our family.”

In April 2023, Charlie, his parents, and his grandmother stayed at our Laklinyeri Beach House – a purpose-built, medically equipped holiday home for families of children with complex care needs or children in palliative care, as well as bereaved families.

Jodie and Steven say, “We loved the house and found all of the facilities so easy, useful and accessible for Charlie in his electric wheelchair.”

“Everything is lovely and the house has a great ambience. We love all the natural light and fresh air.”

“Having all of the equipment options available on-site, and bikes and beach chairs, is so convenient and means you don’t have to bring everything.”

“Thanks also to all of the generous businesses that donate food and experiences – we are very grateful. We can’t thank the WCH Foundation enough!”

Learn more about our Laklinyeri Beach House

2-year-old Marcus is under the care of the Paediatric Palliative Care Service at the Women’s and Children’s Hospital. He and his family were invited to stay at our Laklinyeri Beach House – a medically equipped holiday home in Victor Harbor for children in palliative care or with complex care needs, as well as bereaved families.

Marcus’ mum, Joyce, says, “Where do we even begin? We absolutely love everything about the Beach House, it’s been incredible in so many different ways to cater for our little man Marcus.”

“We love that it has a cot that suits Marcus’ needs, the round couch for Marcus to relax in, the beautiful accessible bathtub so he could have a comfortable bath, the wide passages which allowed easy manoeuvrability of the pram and the step-free access in and out of the house. Marcus also had his first train ride and trip to the wildlife park.”

“Everything about this house and the experience has made our trip away from home so comfortable.”

Marcus and his extended family at the Beach House.

Marcus and his extended family at the Beach House.

Thanks to the size and layout of the Beach House, families often invite their friends and relatives to stay as well. Marcus’ parents, siblings, aunty and uncle, cousins, grandparents and great-grandfather all enjoyed the Beach House with him!

The stay also allowed a much easier trip for the family to attend Marcus’ aunt’s wedding in the Fleurieu Peninsula during the week of their visit.

Joyce says, “We feel really fortunate and thankful to have this opportunity to experience this home with our dearest family.”

Marcus’ grandparents, Tracey and Steve, say, “As grandparents, being able to join Marcus and enjoy the new things with him with such ease has been an absolute pleasure! This is a place of absolute serenity and functionality for all families.”

Marcus, his parents, Joyce and Brady and his baby sister, Lily, at the Beach House.

Marcus, his parents, Joyce and Brady, and his baby sister, Lily, at the Beach House.

Learn more about our Laklinyeri Beach House

“As you can hear, she’s very happy!” Eva says of her 9-month-old daughter, Zoe, who is giggling away. Zoe has managed to keep a big, brave smile on her face through some tough challenges she’s faced in her first few months of life.

Eva explains, “I had quite a complicated pregnancy with Zoe. She was born prematurely at 33 weeks via emergency C-section and was in the Neonatal Intensive Care Unit (NICU) at Flinders for 80 days.”

“When she was there, she was not growing the way she should. She had some infections as well as ongoing diarrhoea, so there were quite a few warning signs that something was going on.”

“Just after we were discharged, we received a call from the geneticists at the Women’s and Children’s Hospital (WCH) to let us know that she was diagnosed with MIRAGE syndrome, a very rare genetic syndrome. There are less than 50 people in the world who have it and it’s very complex in many different areas.”

Zoe is now under the care of the WCH Palliative Care Service, with a team of around a dozen doctors looking after her.

“Despite everything she is going through though, we are very lucky that she is a very chilled baby,” Eva says.

“Zoe loves her brother and sister. She’s always giggling and is very social. She’s a delight.”

Olivier-Goossens family sat outside at the Laklinyeri Beach House.

The Olivier-Goossens family at our Laklinyeri Beach House.

Zoe’s journey

Since Zoe’s diagnosis, many challenges have been thrown her way.

“Children with MIRAGE syndrome are very susceptible to infections which can be deadly for them,” Eva explains.

“Zoe got an infection not long after her diagnosis, and she got quite sick from it. She had to be ventilated and stayed in hospital for five weeks. That was quite tricky, but she made it. Then Zoe got COVID. She actually did quite well which was surprising considering she is immunocompromised as well.”

The family has been home now for a few months. They’re at the WCH weekly for appointments but have been learning to do some of Zoe’s treatment themselves at home.

“It’s quite a journey,” Eva says.

“It’s hard for us to manage and live with the unknown. We don’t know what to expect, so we try to enjoy our time together as best as possible.”

Baby Zoe being held by mum, Eva at our Laklinyeri Beach House.

Zoe showing off her adorable smile with mum, Eva.

A trip to the Laklinyeri Beach House

“We had been planning to go away with the kids since I was pregnant, but every time there was something that came up. It was tricky towards the end of the pregnancy, then we were waiting for Zoe to get out of NICU, then we were waiting for her results, and then she got sick,” Eva says.

“We just wanted to get away, so when a social worker told us about the Beach House we were thrilled! We just wanted to have fun together and get out of the house.”

The Laklinyeri Beach House is a purpose-built holiday facility in Victor Harbor for families of children in Palliative Care or Complex Care, as well as for bereaved families. It’s a special place of togetherness for families to reconnect or to take time out of their rigorous hospital routines to relax and recuperate.

In June, Zoe stayed in the House with mum, Eva, dad, Stephen, sister, Lily and brother, Zack.

Eva says, “We didn’t have any expectations, we just wanted to get out and have a bit of time away and when we got to the Beach House we were blown away. It was amazing.”

Thanks to vouchers from the HAS Foundation, the family visited Urimbirra Wildlife Park, took a trip on the Cockle Train, had a family photo shoot and had massages. Lily and Jack loved having movie nights, exploring the cubby house, doing lots of drawing and playing with the toys they were gifted.

“Even though the weather was horrific, we didn’t care, it was great!” Eva laughed.

“The Beach House is a beautiful home. It’s all made through empathy towards people, and you really can feel it.”

“We’re very, very grateful to have had this opportunity. It was much needed and we loved it.”

To learn more about our Laklinyeri Beach House, click here

“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. 

Throughout summer the WCH Foundation ‘Laklinyeri’ Beach House has been fully booked, with a family holidaying at the extraordinary home each week.

The Booby family welcomed the start of the new decade at the Beach House with their New Year’s Eve celebrations including a movie at ‘Victa Cinemas’ followed by the local fireworks display.

Gemma and Terry’s youngest son Liam, 11, is cared for by the Hospital’s Palliative Care Service. At age two, Liam was diagnosed with LMNA Gene Mutation de Novo Congenital Muscular Dystrophy and Floppy Head Syndrome. Due to the condition, Liam is in a wheelchair and is totally dependent on his parents.

Gemma has shared heart-warming words on what the holiday at the Beach House meant to her family.

What a wonderful place you have created. The main thing is that we would never have been able to stay in such a grand place and to be here in summer is a blessing.

There are so many people I would love to thank for making this dream house come true.

As there is no way I could thank them all personally could you please tell them that our stay has refreshed us, revitalised us and allowed Liam to get around a home without any worry of steps or smaller doorways that his wheelchair might not go through.

He has loved zooming up and down the hall outside his bedroom doing skids. Liam keeps telling everyone that he isn’t leaving, and he is staying here forever. Not sure how the next family will feel about that!

Thank you also for the photoshoot, another beautiful gift that I can treasure and reminds us of this beautiful house.

Liam and his family loved their time at the Beach House.

Highlights of the Booby family’s stay included a visit to Urimbirra Wildlife Park and inviting 20 family members over for a barbecue on the weekend, a gathering that would not have been possible if they weren’t holidaying at the Beach House.

Gemma also loved that her eldest son Declan could have a special time away because of the design of the family centred home.

She added that both boys loved the big television and Declan spent a lot of time riding the bikes and visiting the little beach across from the home.

To help fund families’ stays at the Beach House click here

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