When Queensland mum Debb Stevens looks at her daughter Daisy, she knows there’s a long road ahead to helping her live a happy life like other children her age.
Mrs Stevens is on a mission to raise awareness about Apert Syndrome, a rare genetic condition, which is causing Daisy’s skull, hands and bones in her feet to fuse, causing growth restriction on her brain, as well as physical disabilities.
Apert Syndrome affects 1 in 65,000 babies and is a random genetic mutation, which Mrs Stevens and husband Caine had not heard of prior to Daisy’s birth.
But Daisy’s parents are facing the future with hope, with the knowledge that their precious girl will receive world-leading reconstructive treatment by Mater Private Hospital Brisbane Specialist and Reconstructive Surgeon Dr Diana Kennedy.
Born five weeks premature in January, Daisy was flown from a hospital in Warwick to Mater Mothers’ Hospital at South Brisbane for emergency care.
She was cared for in the Mater Mothers’ Neonatal Critical Care Unit for four weeks.
Mrs Stevens, 33, said Daisy’s arrival was a whirlwind. When she first laid eyes on her she was “shocked”.
“She didn’t look as I expected,” Mrs Stevens said.
“Her fingers were all fused together under her skin and her toes were webbed. I was stoked it was a little girl, but she was very swollen and premature.”
The couple, from Warwick, were told at their 25-week pregnancy scan their baby had “some abnormalities”, with doctors raising concerns about Daisy’s hands, feet and head.
“Throughout my pregnancy there was so much of me that was hoping and praying they got it wrong,” Mrs Stevens said.
Mrs Stevens said it wasn’t until the morning after she gave birth to Daisy did she realise how “divine” her daughter was.
“That’s when I thought ‘You are actually beautiful, you are mine’,” Mrs Stevens said.
Dr Kennedy is helping to transform Daisy’s skull and face so she can live a better life.
“Daisy’s condition is extremely rare,” Dr Kennedy said.
“We might treat three to four children across Queensland and northern New South Wales each year, and some years we may not treat any.”
Dr Kennedy will conduct Daisy’s first craniofacial surgery next month with a long-term aim of normalising her skull and face.
“The aim of the surgeries is to normalise Daisy’s physical anatomy as much as possible in order to optimise her development and function, while also aiming to improve how Daisy looks and feels about herself. This is very important to a child’s psychosocial development and helps promote and foster formation or positive peer relationships.”
Several three to four-hour operations will take place for Daisy this year, with Dr Kennedy saying, “there’s a lot going on for someone so little”.
“Reconstructing her skull to allow more room for her brain is just the first part of this. We will need to also move her brow bone forward to protect her eyes while focusing on making more room at the front of her skull.”
Mrs Stevens, who describes Daisy as “mesmerising and determined” is grateful her daughter will have a normal life expectancy despite multiple surgeries on her skull, hands and feet.
“Down the track doctors will construct fingers for her. One day she will be able to pick up a pen or play the piano, she’ll even be able to wear a pair of thongs if she wants to,” she said.
Mrs Stevens said the birth of Daisy had strengthened their family unit, with brothers Josh, 19, and Ollie, 3, doting on their little sister.
“I have lived in this town my whole life and I couldn’t ask for a better community,” she said.
“Daisy is so adored and has taught us so much. The next generation of children coming through will have so much compassion and kindness being associated with children with disabilities.
“We are giving Daisy a normal, action-packed childhood, as she’s a normal little girl — her normal just looks different to most babies.
“I watch Daisy interacting with her toys and finding ways to move them and play with them, even without fingers.
“Whilst most people’s default reaction is sympathy when they meet us or hear what Daisy has to endure, that’s not we want for her. She is an incredible gift and is here to move mountains.”
Mrs Stevens is calling on other Apert Syndrome families in Australia to come forward to create a support group, and can be contacted via Instagram and Facebook (@daisyblooms).