Maureen Moloney will never forget the moment she said goodbye to her youngest daughter.
Though she will celebrate her second birthday this week, Hannah Fletcher nearly didn’t make it to six months due to her rare and complex food disorders.
After four weeks of vomiting, she weighed just 4.3 kilograms when she was again admitted to hospital.
“It was devastating. There was a time when she went into shock and I honestly was saying goodbye to her,” Ms Moloney said. “To me it looked like she was dying.”
Hannah was eventually diagnosed with Food Protein-Induced Enterocolitis Syndrome (FPIES), a food allergy that causes vomiting, diarrhoea and dehydration.
There is no simple test for the disease and no known cure. All the Blacktown family can do is wait for Hannah to grow out of the condition.
In her case it is complicated by multiple food protein intolerance and gastroparesis, a disorder that stops movement of food from the stomach.
Hannah currently eats via a feeding tube that bypasses her stomach, which Ms Moloney said makes her feel like a nurse as much as a mother.
She said it’s difficult for Hannah’s two older sisters to deal with the uncomfortable stares from strangers in public.
Until recently, Ms Moloney sought help from a community nurse at Doonside Community Centre. She helped the family find support including in-home respite care amid an “overwhelming” combination of specialist appointments.
After confusion around staff changes and rumours of cuts, Ms Moloney started seeing a community nurse in Mount Druitt instead.
She would like to see Western Sydney Local Health District fund more services for parents and children in Blacktown.
WSLHD community health director Adam Cruickshank said there were no recent changes to child and family health nursing services at Doonside Community Centre, and child and family health clinics were available in Doonside, Blacktown and Mount Druitt.
Looking beyond the regular hospital trips and delays to Hannah’s growth and speech, Ms Moloney said her youngest daughter had a “quirky” personality.
“She’s very adventurous. I like to call her my courageous, curious lion. She’s a brave heart,” she said.
“It doesn’t matter how sick she is, she still smiles.”