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 eight 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,” Nat admitted.
“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.
“We said, “Eden, do you want to come back? We’re going to go back to the unit now.” And she flat out didn’t want to, she wanted to stay,” Nat said.
“She had the best two nights’ sleep of probably her whole life. She was so happy, we just knew that she was safe there.”
After forming preconceived ideas of the hospice, Jake and Nat were relieved to see their daughter having fun and making friends.
Jake shares, “As Eden’s health and needs change we can no longer leave her overnight with family anymore. Very Special Kids is our only option.
“We are so excited for Eden to spend time here. It means she can make more independent memories, like all kids do.”
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.
Categories: Family News