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Eden’s story
April 13, 2023
At six months old, baby Eden started having seizures. In a search for answers her parents, Nat and Jake, took their daughter to the hospital and were given the news no parent could prepare for.
“I didn’t have any power in my body to walk,” shares her mum Nat. “They gave us the diagnosis and we were discharged 45 minutes later. We couldn’t even pronounce her condition yet, let alone absorb what they were telling us to do.”
Eden was diagnosed with lissencephaly, a rare genetic condition that results in the brain having an absence of folds, or in other words, a smooth brain.
Eden is now nine years old. She is non-verbal but has her ways of communicating.
“She’s super cheeky,” dad Jake laughs. “She is always playing games, loves going to the park and spending time at the beach.”
“We were told she would never walk or talk, but she communicates with an Eye Gaze,” adds Nat.
The Eye Gaze is an eye-driven communication device. It can generate speech by typing a message or selecting pre-programmed phrases.
Communicating in her own way
Her eyes have unlocked a new world of communication, and a new way to break the rules for cheeky Eden. It gives her autonomy, something that can be hard since Eden is in her wheelchair for hours at a time.
With three children to look after, the family says Eden can now make sure she’s not missing out on anything if she is in another room.
“Instead of sitting there being frustrated and sad, she can say, “Hey, I want to have a go!”, mum Nat said.
Asking for help is hard, but life changing
Eden’s life-limiting condition means she struggles with numerous seizures daily. Her schedule is unavoidably filled with medication, feeding tubes and travel to medical appointments.
For Nat and Jake, the family has tried to do things on their own for the longest time. With three young children and Eden’s extra support, it’s understandable anything extra on top of life became the tipping point.
“It wasn’t until I had a full breakdown in lockdown that people stepped in and were like, ‘you need Very Special Kids'”, Nat said.
At the end of 2020, the family had a walk through the Very Special Kids hospice. It wasn’t what they were expecting.
I was shocked at how normal it was.
My understanding was that it was for end-of-life care and that was it. But the kids were playing, people in there were happy and alive and not looking like they were about to die.
The family’s first stay at the hospice in Malvern was quite eye-opening. Set up in the family accommodation behind the hospice, Jake and Nat were fully expecting to softly introduce Eden to the facilities and have her stay with them and her sisters most of the weekend.
As Eden’s health and needs change we can no longer leave her overnight with family anymore.
Very Special Kids is our only option.
Annie’s Cottage unlocks new memories
The family has also appreciated how Very Special Kids have created opportunities for new experiences with their extended family.
Visiting Annie’s Cottage, on acreage in East Gippsland, the family was able to invite the aunties, uncles and cousins for a glorious weekend holiday on the farm.
Annie’s Cottage is one of the fully accessible holiday accommodation sites that can be rented out free-of-charge by Very Special Kids’ families.
“Most families with children who have a chronic illness don’t have the luxury of using their paid and unpaid holiday leave for actual holidays,” Jake said.
“To have access to accommodation totally free-of-charge means families, like ours, can actually go on holiday.”
Art therapy brings out Eden’s cheeky nature
Eden loves to paint, and Very Special Kids’ art therapy program is one of the many activities where her cheeky nature can flourish.
Mum Nat says Eden recently used her therapists’ shirt as a canvas, which was quite the bonding experience for them both.
Music also unlocks something special in Eden. She is very fond of her floor keyboard, drums and guitar. Her family recently attended Lord Somers Camp, a family networking weekend, where Eden could explore playing with musical instruments in a fun and safe group environment.
“The look of joy when she hits the drum, she’s just so happy and loves having total control over what she is doing.”
Most recently, the family have welcomed another addition to the family. A black and cream borderdoodle puppy named Maverick.
The decision to get a dog came from witnessing Eden’s interaction with Very Special Kids’ therapy dog Jaffa. “She’s the only dog Eden’s had a lot of contact with. Jaffa is so gentle and calming.”
It looks like dog will soon become Eden’s favourite new word on her Eye Gaze.
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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”!
