Ezekiel is the youngest child of his mum Sarah’s 5 children.

Ezekiels mum does’t ask for help, and is a master at finding ways to get through each week. Due to the complex needs for Ezekiel, this means a lot of travel to and from Melbourne to RCH, sometimes having unplanned stays for weeks on end, and Sarah’s other 4 children missing and worrying about their mum and baby brother.

The cost of travel, sometimes at a moments notice due to how quickly Ezekiel’s health can change, makes life difficult at times for this single mum and her family.

Even a little amount of funds to help support the ongoing costs and needs for Ezekiel, will be greatly appreciated for Sarah, which could also mean Ezekiel’s siblings could go to Melbourne to stay and visit when the hospital stays turns into weeks/months.

Please, if you would like to help, every little bit helps and will be greatly appreciated.

Please read below to understand just a little bit of what Ezekiel has been through and just how strong his beautiful, kind and giving mum and siblings have been through in just a short 2 years.

Ezekiel was born by emergency cesarean at 35 weeks gestation following placental abruption causing fetal distress. Up until 2 days prior to birth his mum Sarah, was told Ezekiel was perfectly healthy. Sarah had a scan in hospital due to reduced movement where it was discovered Ezekiel had moderately enlarged ventricles in his brain (Ventriculomegaly).

Ezekiel is now 26 months old and under the care of many different specialist teams at RCH including Cardiology, Audiology, Ophthalmology, Neurosurgery, Maxilofacial, Craniofacial, Genetics, ENT, Gastroenterology. He required neurosurgery in December 2020, to place a Ventriculoperitoneal Shunt to treat his hydrocephalus relieving pressure from his brain and spinal cord. Ezekiel is also extremely small for his age both in height and weight despite adequate nutrition and he is undergoing further testing to find a possible genetic cause for his growth failure. He has been tube dependent for feeding since he was a newborn.

For Ezekiel it’s for a number of reasons. His different anatomy makes it difficult for him to control his tongue and facial muscles which make it hard for him to coordinate the suck, swallow, breathe rhythm, he doesn’t breathe well through the nose either so you can imagine trying to drink from a bottle/breast and breathe through your mouth, he can manage brief breastfeeds for comfort, but it’s not enough for development. He has episodes of aspiration where fluid is breathed into the lungs instead of swallowed into the stomach which is unsafe. He has developmental delays which make eating orally a challenge and for now he can manage very small amounts of moderately thick custards etc but nowhere near enough to sustain growth and his nutritional requirements. He can suck on a lot of foods which is a big step but most gets chewed up and spat out. He also has a heart condition where his heart beats a lot faster and his body burns calories too fast so his intake requirements are also a lot higher.

A month ago Ezekiel under went surgery to “graduate” from the nasogastric tube (which is inserted through the nostril and fed down into the stomach) to a surgically inserted Gastrostomy Tube (G-Tube). There are so many reasons why a person may need a feeding tube and there are different types.

Ezekiel latest surgery is still causing him struggles, with returning home for a brief 12 hour period, only for Sarah to have to go straight back to RCH the next day due to an infection flare up.