Patient Stories

Read real stories from families who have navigated complex feeding challenges and discovered what’s possible with the right multidisciplinary support.

Stories featured on The Blend Magazine

Belle was born at 27 weeks and was on oxygen for six months - and with all of the tubes, suction, and general care in the hospital, an oral aversion was created. She would not take to breastfeeding or bottle feeding and had not eaten anything solid until we met with Kids Feeding Specialists. We see the whole team once a month, with ongoing weekly support from Amanda and Simone as needed.

During our first meeting, Simone said, "We want to support the parents as much as we support the child".

That meant so much to me because for months. I felt like no one was listening to me in the hospital setting.

Simone suggested changes to Belle's enteral feeding regime and immediately, her frequent daily vomiting ceased. Belle has now been weaned from her tube feeding, and her love for eating is growing every day.

Emily Taylor, mum

Belle

You don't want to feel like your child is just another patient, just another number. My goal as a parent is to surround Charlotte with a team of superstars who are genuinely invested in making her life better. And as soon as we met Simone, she was clearly one of those people. Her team is actually interested in and genuinely cares about complex children.

Charlotte was born with a rare genetic condition called Cockayne syndrome and requires blended tube feeds to optimise her growth. It would be easy to go into Charlotte's sessions and focus entirely on her tube-feeding and growth, but Kids Feeding Specialists is more holistic than that. They make the space and time to say, "Hey, how are you going? How are you dealing with this at the moment?" It's about the family as a whole, as opposed to just the professional piece around Charlotte's diet.

To families who are new to this experience, I'd say take the time to find those superstars. Be ruthless. Move on, if you need to, from therapists who aren't there to support you in the way that you need. And once you find that A-team, hold on to them for dear life!

Sarah Matthews, mum

Charlotte

Alysia has Rett syndrome and has been PEG-fed since she was three years old. She was also eating orally up to the age of 13, when she had her spinal fusion. Since then, she's been fully tube-fed and was having problems tolerating her formula. Alysia started to vomit after each feed and was crying and very unsettled both day and night, so I contacted the Kids Feeding Specialists team, and Simone advised us to start blended tools.

We tried breakfast first, and within two days, the vomiting stopped. We then started on blends for dinner, and it's been fantastic. Alysia has been so happy. She loves the Greek food I cook!

Anna Dalianis, mum

Alysia

My wife Reena and I moved from Nepal to Kogarah, NSW, seven years ago. We never imagined our journey here would include navigating the complexity of tube-feeding a micropreemie - but that's exactly where life led us.

Our daughter Evelyn was born at just 25 weeks, weighing only 427g. From birth, she was fed entirely through nasogastric (NG) and nasojejunal (NJ) tubes. Chronic lung disease meant she needed oxygen support until she was one year old - and feeding by mouth just wasn't possible during that time.

Because Evelyn never had the opportunity to drink or eat orally as a baby, she didn't develop eating skills. Tube-feeding became essential to her survival and growth.

Initially, the hospital provided speech pathology, occupational therapy, and dietetics support, once our National Disability Insurance Scheme (NDIS) funding was approved, we transitioned to Simone's team at Kids Feeding Specialists. From the first conversation, we felt convinced we were in the right hands.

Simone changed Evelyn's formula, which dramatically reduced her vomiting. She also suggested commencing reflux medication to her medical team, and it made a world of difference to her oral feeding progression.

Evelyn had severe food aversion - she refused to eat anything. Simone and her team introduced us to something we'd never considered: food play. She encouraged us to let Evelyn explore food independently and engage through role play. No pressure, just play.

Progress happened with persistence. At first, Evelyn wouldn't even touch the food during play sessions. But we kept going, despite the setbacks.

After a couple of weeks, she finally put food in her mouth by herself. It took even longer for her to swallow - but eventually, she did. She began exploring more foods and, slowly, eating them.

Today, at two years old, Evelyn eats three meals a day by herself. This journey hasn't been easy, but with proper guidance and support, we now have hope that one day our baby won't require a tube at all - and will eat entirely by mouth.

Reena and Bikesh Baju, parents

Evelyn

Josie, my daughter, is 13 now. She has FOGI syndrome, a rare genetic disorder that means she uses a wheelchair and is non-speaking. She also experiences seizures and cortical visual impairment. Josie has been tube-fed since she was seven months old, first with an NG tube, then a G-tube at 15 months.

Tube-feeding literally saved her life - she was a skeleton before we got the tube. But for the first few years of her tube-feeding journey, we struggled.

The hospital handed us a commercial formula and sent us on our way. We tried many different formulas - and none of them were right for her.

Josie had constant reflux, vomiting, and loose bowels. She was growing, but she was always irritable, always uncomfortable. She wasn't healthy.

Then came the turning point. Josie needed major hip surgery and would be in a full-body plaster for six weeks. I was terrified. How would I manage her diarrhea and vomiting in a cast?

That's when Simone from Kids Feeding Specialists suggested something revolutionary: a plant-based, whole-food formula called Nourish [by Functional Formularies] from the United States.

The change was immediate.

Josie had formed bowel motions! The rattly cough in her chest disappeared. The reflux improved and we were able to halve her reflux medication.

Everything improved. After four years of hell, we'd finally found something that worked. She thrived on Nourish from 2016 until now, growing beautifully with amazing hair, skin and nails.

Before Nourish, Simone had suggested something even simpler: "You could just blend food and put it in." I remember thinking, what? Why had I not thought of that? I feed my other kids healthy food. I'm a healthy person. Why wasn't doing that for her?

We tried a blended diet when Josie was little, but she couldn't handle the volume. Now, as a teenager, she's thriving on it. Since switching to a combination of real food and Nourish, she's come off her motility medication completely. We hope she may soon need no reflux medication at all.

My advice to other parents? If you're not happy with what you're being told, get a second opinion.

Don't just accept whatever the doctor hands you. Ask questions: what do other people do? Are there alternatives? I wish someone had told me, years ago, that there were other options besides formula from a bottle.

Simone opened my eyes to possibilities I never knew existed. That changed everything for Josie - and for our whole family.

Sara Fishwick, mum