Lovely Lylah gets her play area
Thanks to Make-A-Wish supporters and partners, Lylah now has an outdoor sensory area, so she doesn't have to stay inside to play.
Unsettling year
Infection after surgery
While 2020 will be remembered for the impact COVID-19 had on our lives, for Wish child Lylah’s family the year will be remembered for other reasons.
It was the most challenging year in the life of Lylah, now aged 8.
In February, 2020, Lylah and her family had made the long trip from their WA coastal town to Perth to have surgery to correct significant curvatures of her spine.
Shortly after being discharged, Lylah experienced a septic infection and had to go back to the hospital to start a long course of antibiotics.
Morning shock
Lylah rushed to ER
Worse was to come in August when mum Jaymee and dad Robert heard Lylah gasping for breath at 3am one morning.
They put her in their car, and Jaymee drove to the hospital as Robert gave their daughter mouth-to-mouth resuscitation.
“She was unresponsive and had changed colour and was quite cold and floppy,” Jaymee said.
“She lost all consciousness. She opened her eyes briefly, but by the time we got to the ER department, she had lost consciousness again. But they got her back. They then flew us to Perth as something wasn’t right.
“That’s when they discovered her collapsing airwaves.”
Tests confirmed the respiratory problem was severe tracheomalacia. By that stage, Lylah had already been diagnosed with pulmonary hypertension, which is heart and lung disease.
In addition to these critical conditions, Lylah has an undiagnosed genetic syndrome. She is non-verbal and needs a wheelchair to move around.
Give a moment to look forward to, and one to look back on.
Wish application
'Making memories is the main point'
After a scary 2020, Lylah is now considered a palliative child.
Jaymee said it meant the family had developed a fresh appreciation for life.
“It does give you that different outlook on life; making memories is now the main point of everything,” she said.
In line with their desire to create lasting memories, Jaymee applied to Make-A-Wish to grant a wish for Lylah.
Wish realisation
Magical space for Lylah
Their wish for an outdoor space in their backyard for Lylah came true this year.
Jaymee said they didn’t have a backyard suitable for Lylah to play in, which meant she spent most of her time inside their house.
But thankfully, donors like you allowed us to create a beautiful outdoor sensory area specifically suited to Lylah's needs.
“There’s a circular hanging day bed with comfy cushions and throws for Lylah to sit or lie back in, matting on the floor so she can move herself around – it’s soft and safe for her. There’s also lots of sensory boards, and she can bang and make all the noise she wants.
“There’s even fairy lights across the roof which makes it feel magical”.
Power of the wish
Family enjoys time together outside
Jaymee said Lylah had quickly become accustomed to her new outdoor area.
“The other week, we had her out the back, and she scooted around playing with her toys, before she started to get tired – she’s on oxygen 24/7 – so we popped her on her sensory bed with all her cushions and rugs, and she went straight to sleep,” Jaymee said.
“It was the five of us including her brother and sister, so we were all outside as a group, and it was the perfect space to be able to enjoy outside time with all of us together.”
Jaymee said the outdoor area would allow “so many more memories” for her family.
“It has made such a big difference for our family and with Lylah being palliative, the memories we’re creating now will be cherished so much in the future.”
With Lylah being palliative, the memories we’re creating now will be cherished so much in the future.
Jaymee, mother of Lylah, 8 undiagnosed genetic syndrome
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