Weighing just 915 grams at birth, it is a miracle Masterton toddler Lilly Dickon is still alive. But the smiley youngster is now a bundle of energy, always on the go. Emily Norman reports.
Born at just 25 weeks, Lilly Dickon was a miracle baby, and a fighter from the start.
The Masterton toddler is now almost four years old, but has water on the brain and suffers from hemiplegic cerebral palsy, which affects the left side of her body.
That doesn’t stop her from living life to the full however, posing for cameras, and sporting a cheeky smile for most of the day.
But it has been a long road making progress, according to her mother, Amy Dickon, who gave birth to Lilly roughly four months early at a weight of only 915 grams.
“Three days after Lilly was born, we were taken to the quiet room in the intensive care unit because the specialists discovered Lilly had a grade 4 and 3 brain haemorrhage… she was a very sick little baby.”
From there, things got worse for the young parents.
“We got told to turn her life support off.
“When we got her out for cuddles and we were saying goodbye to her, for some reason, she opened one eye, squeezed our finger, and from that moment we just said, ‘Carry on the treatment’.
“If she’s going to go, she’ll go on her own, we just couldn’t do it.
“And I’m so glad we didn’t because even though she’s not walking, she’s still pretty happy and her understanding with everything is pretty good.”
Mrs Dickon said after initially being told Lilly would not be able to do anything, “everything she does now is just a milestone”.
“She’s just on the go all the time and she laughs at everything,” she said.
Lilly started kindergarten last term at Masterton West, and has made a few friends there since – “actually, she’s got the kids wrapped around her finger there”.
“They bring her toys, and play with her all day, it’s amazing.”
Even though Lilly can’t talk, she is “obsessed” with music, and loves hip hop especially.
“Music is a way she can communicate with us,” Mrs Dickon said.
“When we did music therapy with her up in Auckland we would bang on a drum and she’d copy it perfectly – if we tapped twice, she’d tap twice, that kind of thing, she’s really engaged.
“So we’re hoping to get her into drums and maybe guitar one day.”
Lilly is also awaiting constraint therapy which will be administered by a specialist from Sydney in Australia.
The therapy involves constraining her right arm to teach her how to use her left arm.
“At the moment she is being held back from walking because she can’t hold on to her walking frame,” said Mrs Dickon who hopes Lilly will be able to walk one day.
“She’s got so much potential; you can see it when you look at her.”
Lilly has an older brother, Conrad, who is 6 years-old, and a baby sister, Emma, 1.
Both were also born premature at 27 weeks and 29 weeks respectively.
“People say to us, how do you do it, how do you manage?
“But you do what you have to do I suppose. We just do it day by day.”
Lilly’s family have set up a Givealittle page to collect funds which would go towards constraint therapy for her and for any ongoing treatments in the future: givealittle.co.nz/cause/helpmisslilly
