Help make the ordinary extraordinary for children like Allira in complex or palliative care.
The simple joy of a getaway by the sea may seem ordinary for some. But for families with children who live everyday with illness and uncertainty, the chance to experience a beach holiday is extraordinary.
At just 13 weeks old Allira was diagnosed with a very rare genetic disorder, so rare that she is one of only 700 people in the world with this condition. Allira’s mum Remiko was told there was no cure and Allira would require ongoing care for the rest of her life.
Please take a moment to watch Allira and Remiko’s story.
“At the age of one, Allira was booked in for surgery at the Women’s and Children’s Hospital, which unfortunately did not go to plan,” Remiko shares.
“Allira ended up staying in hospital for several months and during this time we were told she might only have a few weeks to live.”
“Amazingly she pulled through and we eventually got to go home but from that moment on, we realised we needed to continue to make lots of memories with her because we didn’t know at that stage how long she was going to live.”
On three occasions Remiko has been told she needed to say goodbye to her daughter. Remiko says, “It doesn’t get any easier the next time you hear it.”
The uncertainty of life with a child with complex needs means daily life requires constant forward planning. Allira’s round-the-clock care, specialised equipment, medication and feeding requirements must always be taken into account.
Amidst the chaos of living every day not knowing what is around the corner, the Women’s & Children’s Hospital Foundation Laklinyeri Beach House in Victor Harbor provided the family with the opportunity for a beach getaway. The purpose-built holiday home is medically equipped for families with children with extreme and complex needs.
Remiko explains “We were lucky enough to go down to the Beach House, it’s such a beautiful space. It was a huge relief to know that part of our lives wasn’t finished. To have those smiling, happy photos and memories to cherish forever is amazing.”
Supporting families and their sick children everyday.
From the moment families walk into the Laklinyeri Beach House they are immediately filled with the sense that the home has been thoughtfully and lovingly created for them.
Your support will fund services and programs like the Beach House that directly benefit families like Allira and Remiko’s.
Why is the Beach House so special?
Going on a holiday is not an easy undertaking for families whose children are in palliative care or who have complex medical needs. However, their wish to holiday as a family and create treasured memories in the limited years they have together is why our Laklinyeri Beach House was built.
Located in Encounter Lakes at Victor Harbor, the Beach House was carefully designed, constructed, and medically equipped to meet the specific needs of the very special families who stay, while the bright and beautiful interiors, landscaping and sweeping views of the lake create a sense of calm and wellness.
Beach House features
Lifting equipment in the bedroom is designed to safely carry a child from the bedroom to the bathroom. For families who don’t require the hoist it can be packed away with other equipment in specially customised cupboards.
The bath in the accessible bathroom features regulated water temperatures and height adjustments. Height adjustment allows for ease of access when entering/exiting the bath but also eases the strain on a carer’s back. Other features include adjustable lighting and music.
Medical equipment, cleaning and storage
The Beach House features a wide variety of complex care medical equipment. Items include a patient bed, mobile IV pole, beach accessible wheelchair, oxygen concentrator and more. For children with medical equipment that requires distilled water for cleaning, there is a secondary sink in the kitchen specifically for this purpose.
Space for extended family
The Beach House can sleep up to 12 people, allowing immediate family, as well as extended relatives and friends to stay so that everyone can share in the experience.
The bunk room sleeps four and is on a separate wing to the master and child’s bedroom – far enough away for siblings to enjoy activities without disturbing any complex care requirements, but not so far a sick child misses out on time with their family!
There is also a self-contained bedroom come living space which can be used by a carer who travels with the family, grandparents, or any other extended family. The room contains a fold out bed, kitchen appliances and TV.
A unique experience for each family
The dedicated team at the WCH Foundation will work closely with each family to ensure that the Beach House is set up for each family’s needs. This includes setting up or packing away medical equipment or readying rooms for any extended family.
Where appropriate our team will work with the local community to provide the opportunity to make the most of the sights and experiences on offer in and around Victor Harbor. Creating treasured memories is an important part of each Beach House stay. Included as part of each stay is time spent with a photographer to capture family portraits in the relaxed environment provided by the Beach House.
Help support sick children living every day with health challenges.
Your gift will help kids like Allira and their families cope living every day with huge health challenges and enable them to enjoy an extraordinary getaway. We can’t do it alone. Join us and make your tax-deductible donation this Christmas.