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Charlotte’s story
March 8, 2023
In 2019, Charlotte was like any other nine-year-old. She loved to dance, swim and spend time playing with her dolls. However, unlike most nine-year-olds, Charlotte was also facing a very scary diagnosis.
“It began with a few signs of shaking and then she started to experience other symptoms like headaches,” shares Charlotte’s mum Louise.
A visit to the doctor quickly led to a neurological exam and MRI scan, where they discovered a large cyst in Charlotte’s brain.
“I was scared,” Charlotte says. “They told us we had to come in straight away. And the next day we flew to Brisbane. Then that same day, I had my first surgery.”
Charlotte was diagnosed with Labrune syndrome, a genetic condition that has less than 100 recorded cases worldwide. The degenerative disease causes progressive calcification and cysts on the brain, leading to loss of brain function.
Charlotte shares, “No one knew my case. I’m the only person in Australia that has it. In the UK, there is about three families, so it’s a very rare condition.”
As their world turned upside down, the family decided to relocate from Townsville to their hometown of Numurkah in regional Victoria for family support. This is when they were first referred to Very Special Kids.
When we first become involved, I didn’t realise how many amazing things Very Special Kids does for families. Now we try and take on all the opportunities that are given to us, because it makes our whole family feel so much joy.
Charlotte’s mum, Louise
According to Louise, Charlotte’s favourite thing in the world is going to the hospice at Very Special Kids House. Respite care is provided by a specialised team of registered nurses, personal care workers and allied health staff, ensuring each child can create lasting memories during their stay.
Beaming with excitement, Charlotte shares, “It’s like a really fun holiday… I love the arts and craft. I also like dancing, I got [the nurses] onto Just Dance.”
Louise adds, “Charlotte is my sidekick at home and 90% of the time she will get her way. So, her siblings also appreciate being able to spend time with just me when Charlotte stays at Very Special Kids.”
One of her siblings, Grace, is a member of the Very Special Kids’ Youth Advisory Group and recently attended Mittagundi Camp with other adolescent siblings.
Grace shares, “Being a part of the Youth Advisory Group has allowed me to meet people with similar experiences to me and have a say in things that affect others like me. I have always wanted to help others.”
Grace is an active member of the Very Special Kids community and recently completed her volunteer training with our supporting partner, Lord Somers Camp and Power House, so she can be more actively involved in future Very Special Kids family camps.
Charlotte’s family has also received support and counselling from their Very Special Kids’ family support practitioner, Jenni. As a full-time music teacher and single mother, Louise is so thankful to have Jenni in her corner.
“Jenni has been so supportive. She’s always looking out for us and our welfare. When we first arrived back from Townsville, we were doing it really tough, and she helped the kids and I get back on our feet.
“Everything we’ve done at Very Special Kids is always so beautiful and caring, whether it’s going to the holiday accommodation in Woodend, Lord Somers Camp or Charlotte going to respite. It makes the world of difference,” shares Louise.
When asked what advice Charlotte would offer to other Very Special Kids families who are thinking about going to a Very Special Kids event, Charlotte exclaimed gleefully, “give it a try, you might like it”!