Wee Lily-Grace Davies clambers onto the coffee table at her family home and claps triumphantly at the top. “Stand up!” exclaims the adorable little girl with the soft brown curls, who has just turned three.
While some parents would scold their toddler for climbing on a table, for Auckland couple Amanda and Warner, both 46, Lily-Grace’s feat is nothing short of a triumph. “We are living with a miracle – a-one-in-100 million miracle – and her name is Lily-Grace,” says Amanda.
Before their daughter was conceived, Amanda suffered six heartbreaking miscarriages. Being pregnant with Lily-Grace was like walking on eggshells for months on end.
“We bought a Doppler [ultrasound] so we could listen to the baby’s heartbeat every morning before we left for work,” tells the doting mum.
After a fraught pregnancy, Lily-Grace arrived six weeks early, weighing a fragile 1.7kg. “She looked like a baby bird that had fallen out of a tree,” recalls Amanda.
After noticing her tiny newborn’s slanted eyes, the first question Amanda asked in the delivery suite was, “Does she have any markers for chromosomal disorders?”
“Yes,” announced the theatre nurse as her tiny girl was rushed from the theatre, struggling for breath. Six weeks later, the couple’s longed-for baby was diagnosed with extremely rare chromosomal disorder Trisomy 9 Mosaicism, which affects only 160 people worldwide.
The heartbroken pair were told that their daughter would probably never see, hear, walk or talk – and she would need to be ventilated and tube-fed for the rest of her natural life.
“We threw the geneticist’s letter in the bin,” admits Amanda, gathering the busy wee girl into her arms. “Look at Lily now!”
Lily-Grace can read 20 words, is learning to spell and loves to bounce on her trampoline. “She brings so much joy into our lives.”
Amanda and Warner’s story began 30 years before Lily-Grace joined their family. They went to Mt Roskill Intermediate and Grammar School together.
“Everyone at school had a crush on Amanda – she was Miss Three Kings!” Warner says proudly of his wife’s teenage beauty pageant title. Both from Christian backgrounds, they spent time together with children in the school’s special needs unit but lost contact at the end of school, when Amanda married at 18. She has two adult children, Jonathan, 25, and Jessica, 24.
Amanda and Warner reconnected five years ago and married within a year. They both wanted to start a family but knew that Amanda was high risk – during her earlier pregnancies, Jonathan and Jessica had suffered from intrauterine growth restriction.
Tragically, the couple lost their first baby, Michael, at 10 weeks. “I was at work and I just had a feeling in my guts,” says Amanda quietly. “At the scan, the radiographer turned off the machine and said, ‘Sorry.’ I remember looking at Warner and saying, ‘What if that was my last egg?’”
The couple mourned deeply for their son, who today lies under the pohutukawa tree in the garden of their Mt Wellington home.
“I remember saying losing a baby isn’t my worst fear – a baby with a chromosomal disorder is,” says Amanda. “I thought, ‘God wouldn’t do that to me.’”
But tiny Lily-Grace battled for life the minute she came into the world on Easter Monday in 2014.She couldn’t feed or breathe and spent her first 50 days in neonatal intensive care, before going home on oxygen.
For her parents, the grief associated with being told they had a medically fragile special needs baby gave way to a determination to protect her.
“There was a fear of the unknown,” confesses Warner. “But we loved Lily-Grace fiercely from the beginning.”
Refusing to have a feeding tube fitted, Amanda spent the first five months at home drip-feeding 30ml of breast milk into Lily’s mouth hourly, night and day.
The family went into isolation for a year to protect Lily-Grace’s compromised immune system. During that time, Amanda needed support from Maternal Mental Health and was also diagnosed with a connective tissue disorder.
“We just went into battle for Lily-Grace and did what we needed to do,” tells Amanda. And although her development was delayed, their little miracle learned to crawl, talk and walk by 24 months.
“We took a video – we are in our pyjamas and we look terrible, but we didn’t care,” says Amanda with a smile.
Today, Lily-Grace suffers extreme social anxiety, chronic joint pain, various physical abnormalities and suspected heart problems, but most days, she is a chatty and happy girl who has astounded doctors with her progress.
She even has her own Facebook page – Lily-Grace 1in100million – and Amanda and Warner have reached out to the three other families in Aotearoa with Trisomy 9 children to offer support and help raise awareness.
For as long as they can, the couple say they will continue to invest every cent they own and every hour they have into Lily-Grace. Her life is a whirlwind of dietary requirements, therapies, support groups and special education – and it’s a $40,000-a-year labour of love that Amanda and Warner help pay for by fundraising through the charity Givealittle.
“We know everything we do in the first five years will set Lily-Grace up for life,” explains Amanda. Warner concludes, “We just dream of Lily-Grace living a normal life and being happy.”
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