Meet Our Little Lily- Grace

Their gorgeous girl is a medical marvel!

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.