BRAVE FAMILY’S HEALTH BATTLE
THREE KIDS FIGHTING CONDITIONS:
AMELIA and Patrick Abouzeid have faced more heartbreak than most could imagine.
Three of their four children suffer from health issues, while the Lara pair have also struggled with the pain of pregnancy loss.
In their first year of marriage, after tying the knot at just 19, the pair experienced their first pregnancy loss.
After four years and fertility struggles, the Abouzeids were overjoyed to welcome their first child, Alliyah.
But when she was introduced to solid foods, Alliyah, now 9, exhibited alarming symptoms including vomiting, choking, weight loss and food refusal.
After years of tests, doctors diagnosed Alliyah with eosinophilic esophagitis (EoE).
EoE is a chronic, allergic inflammatory disease of the oesophagus, and Alliyah still sometimes experiences flareups.
While grappling with their firstborn’s health concerns, the couple experienced two further pregnancy losses.
But the births of daughters, Chloe, now 5, and Ella, who turns 3 on April 20, brought joy into their lives.
As a baby, Ella started rapidly losing weight, and often vomited. She was diagnosed with food protein-induced enterocolitis syndrome (FPIES) — an adverse food reaction involving the immune system that mainly affects infants and young children.
Mrs Abouzeid said the only foods Ella could safely consume at the time were sweet potato, Weet-Bix and pumpkin.
Due to malnutrition, doctors decided she needed a feeding tube, and she eventually received a tube pegged into her stomach.
But what came next will haunt her parents.
Six weeks after the insertion, Ella was hospitalised after she became tired and ill.
While at hospital, Mrs Abouzeid, 33, who had recently discovered she was pregnant again, noticed her daughter’s pyjamas covered in black ooze.
Ella was rushed to the Royal Children’s Hospital where her parents were informed that Ella had buried bumper syndrome (BBS).
BBS is an uncommon complication of percutaneous endoscopic gastrostomy (PEG) placement. It occurs when the internal bumper of a gastrostomy tube erodes into the wall of the stomach.
She underwent surgery but Ella’s health woes continued, and she was hospitalised multiple times before doctors finally reinserted a feeding tube via her nose.
In 2020, the family welcomed another child – Ezekiel, known as Zeke — who was constantly crying and not developing as expected.
After he underwent a series of medical tests, his neurologist informed Mr and Mrs Abouzeid doctors harboured serious concerns for Zeke, who was showing neurological abnormalities.
He was diagnosed with cerebral palsy, dystonia (a movement disorder in which a person’s muscles contract uncontrollably), and cerebral irritation.
Zeke is unable to sit up by himself yet and requires “at home oxygen therapy” due to troubles breathing stemming from central sleep apnoea.
Zeke, who is expected to require a wheelchair and turns one on April 21, is still in and out of hospital.
And the brave boy, who is undergoing further tests for an underlying genetic disease, had a feeding tube inserted this week due to ongoing bowel function and swallowing issues.
Mrs Abouzeid said the family was grateful to have been supported by Syndromes Without A Name (SWAN) Australia, with the organisation helping them navigate the world of undiagnosed disease.
“You sometimes feel like you’re drowning,” she said.
“You don’t have a choice but to keep going; life is not going to stop.”
She described her kids as amazing, resilient and kind.
A fundraiser established by loved ones aims to help the family with ongoing medical bills and to make their home more accessible.
Donations can be made at the Go Fund Me page called ‘Help the Abou-zeid Family’.