- When Angie Foy’s daughter, Harper, was born with a thick layer of white skin covering most of her tiny body, she was terrified.
- Harper was diagnosed with a rare genetic skin condition called Harlequin ichthyosis.
- Now age 10, Harper has grown into the most confident, unstoppable force.
Here Angie tells her story in her own words.
Racing to the bathroom, there was a rush of warm liquid between my legs.
This can’t be happening! I panicked realising my waters had broken.
It was September 2015, and just eight months along with a baby girl, it seemed she was in a rush to arrive.
Calling out to my husband, Kevin, then 38, we left our son, Jaxon, then five, with my in-laws, before racing to hospital.
There I was rushed in for an emergency C-section.
‘This can’t be happening.’
Kevin had brought along his camera to capture our girl’s birth.
But as soon as she was lifted out of my stomach, silence filled the room.
The atmosphere told me something was wrong.
‘What’s going on?’ I fretted, but my daughter was whisked away to the NICU before I could even see her.
Hours later, we were finally able to visit our sweet girl, who we named Harper.
But nothing could have prepared me for seeing her in the incubator – a thick layer of white skin, like a shield of armour, covered most of her tiny body.
She had several deep wounds where the skin had cracked and her eyes were sealed shut.
A dermatologist confirmed she had a genetic skin condition called harlequin ichthyosis, which had been passed down by both me and Kevin, though we were unaffected.
It meant our girl’s skin would grow and shed 10 times faster than average. The skin would harden, then split, causing open wounds all over her body.
‘We’re not sure if she’ll live,’ doctors gently warned me, saying there was a 50 per cent chance of survival.
Unable to even hold her, I had to wear gloves to cradle her tiny hand through a hole in the incubator.
‘She’s a fighter.’
Looking closely, I also saw that she’d lost four of her fingertips due to a loss in blood flow from the armour-like plates that’d formed.
To prevent further injury, our girl was airlifted to a bigger hospital for a critical operation at just two days old.
During the op, surgeons sliced through the thick white build up of skin to allow circulation to her limbs, which she was in danger of losing otherwise.
‘She’s a fighter,’ Kevin assured me, as we waited anxiously to see her in recovery.
Thankfully, the operation was a success.
Nurses gave Harper special baths and used ointment to help soften the skin so eventually it would slough off.
When she was three weeks old, I was able to hold her for the first time.
‘You’re perfect,’ I smiled.
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After several more weeks, Harper was able to breathe with more ease, as the remaining build-up of skin that was weighing down her chest and ribcage fell off.
When I finally saw her beautiful face beneath the thick layers of skin for the first time, I was besotted with her gorgeous eyes and sleepy smile.
For the next three months, Harper was closely monitored in NICU while we learned how to care for our girl.
As her skin was so fragile, she needed to be washed regularly to avoid infection, then covered in hydrating ointments to prevent thick skin building up again.
Family and friends took care of Jaxon.
‘Your baby sister has very fragile skin.’
‘Your baby sister has very fragile skin,’ we explained to him.
He was able to meet her for the first time in hospital, while she was in her incubator.
I was over the moon in December when Harper, then three months, was given the all-clear to leave hospital.
Back home, we had to ensure her new routine was down pat.
We gave Harper three one-hour-long hot showers a day to keep her skin hydrated.
And like the nurses did in hospital, we also began spreading thick layers of ointment onto her fragile skin.
Because the greasy ointment affected her clothes, we had to buy new items all the time.
READ MORE: ‘Medical miracle: Our boys share a heart’
Incredibly, Harper reached all her milestones such as babbling and smiling on time, aside from crawling and walking, which were difficult due to the painful tightness in her skin.
Watching her take her first wobbly steps at age three, Kevin and I were overjoyed.
When I suggested our gorgeous girl start modelling, aged four, she was over the moon.
Striking poses in front of the camera, Harper’s energy was infectious.
Sharing the stunning images to her Instagram account @harper.incredible, I wanted to spread awareness about her unique condition.
Her lovely followers were so kind.
Beautiful, one person wrote.
You always make me smile, another commented.
By the time Harper started primary school, aged six, there was no stopping her. Our girl had grown into the most confident, unstoppable force.
Now 10, Harper is down to two one-hour-long hot showers a day, instead of three.
And to help pass the time, she keeps herself entertained by watching movies or listening to country music on a nearby iPad.
In her free time, she’s always on the move!
Whether it’s playing with Jaxon, now 15, strumming the ukulele, or dancing at home, she is a little star.
Our precious daughter also recently strutted her stuff on the runway for a fashion show.
And our sport-loving girl would love to play basketball professionally when she’s older.
‘I want to model with Michael Jordan for Nike!’ she says.
Harper’s dreams are big and bright.
I have no doubt she’ll be able to conquer anything she sets her mind to.
I’m so proud of our shining star.
