The 13-year-old is among the first in the state to access the revamped Very Special Kids House — Victoria’s only children’s hospice service.
Charlotte was nine years old when she was diagnosed with Labrune syndrome, a rare genetic brain condition that causes progressive calcification and cysts on the brain, leading to a loss of brain function.
She is believed to be the only person in Australia with the condition and one of only 100 cases worldwide.
She had the first of many stays at the home a year after the diagnosis.
“It gives me a holiday when I kind of need it,” she said.
“It gives me a place to go and have fun without my siblings and where I can be myself.
“When I come back home, I say, ‘Mum, when is my next time?’”
Charlotte’s mother, Louise Hall, said Very Special Kids had been a saviour for the entire family, offering care packages and counselling for her other three children as well.
“It’s hard to find places where Charlotte feels safe and Very Special Kids has been able to establish that environment where she can go knowing she’s going to be loved and supported and everybody else is going to have a Charlotte-free holiday,” she said.
“We love Charlotte to pieces, but having a child with a life-limiting illness is hard on the other kids because they know that fair isn’t always even.”
“It’s a win-win,” Charlotte said.
Although a palliative care facility, the new Very Special Kids House was designed as a bright home away from home and includes spaces for music and light therapy, a wheelchair-accessible playground, a hydrotherapy pool and eight private rooms for young guests to stay in.
The new service took four years of planning and construction and provides world-leading facilities and specialist support, respite and end-of-life care for children and their families.
The new home opened on November 21, coinciding with A Very Special Day, the charity’s fundraising event.
Donors raised a record $822,073 during the annual matched giving day.
Very Special Kids chief executive Michael Wasley said the charity was blown away by the result.
“Thank you to all our generous supporters who donated on this unforgettable day,” he said.
“Every dollar of this incredible result helps ensure the doors of Very Special Kids House remain open to Victoria’s sickest children and their families when they need support most.”
During her time at Very Special Kids, Charlotte made a special connection with the program’s therapy dog, Jaffa.
Until December 24, Shepparton residents can help by purchasing a Christmas bauble from Petstock Shepparton, by rounding up their purchases in store or by donating online.
Very Special Kids will use its share of funds raised to provide comprehensive allied health services, including their therapy dog program, to ensure Jaffa can continue to be a support to Charlotte.
Very Special Kids House is located on Glenferrie Rd, Malvern. To donate to the charity, go to vsk.org.au
17°C