A bond that binds
By Rebekah Devlin
It’s an unlikely friendship but for 17-year-old Hunter and two-year-old Rory, the connection was instant.
Rory’s older sister, Jazmyn, attended school with Hunter and when their paths crossed, the shared experience was the catalyst for a sweet and devoted friendship.
Rory, who is partial to pulling out his tube multiple times a day, even cheekily tried to show Hunter how he could pull his tube out for him!
“Rory just adores Hunter,” says mum Karla.
“It’s just a beautiful friendship and I think it’s reciprocal for Hunter too. Even though Rory’s so much younger than him, to have someone who has the tube as well, there’s that mutual understanding, even though they might express it differently.
“And Hunter is so devoted to him, he is always trying to show him things and take care of him. He even wants to help with changing nappies, which most people never want to do.”
The pair live some 125km apart in regional South Australia and regional Victoria, but they try to catch up as often as possible.
“We live in a town of just 200 people, so for Rory, apart from when he has to go into hospital, he’s never really been around another child who has an NG tube, and especially during COVID, there wasn’t the opportunity to connect with other kids in the same situation. So this friendship with Hunter has just been so precious.”
Hunter has multiple disabilities; two chromosomal abnormalities, Ehlers-Danlos syndrome, eosinophilic oesophagitis (EoE), autism, epilepsy and developmental delay. Despite the efforts of dietitians and specialists, food gave Hunter constant pain. As a result, he lost more than 25kgs in the last few years. At 15, he experienced brain trauma from a seizure lasting 42 minutes. Since then, he has barely touched food and has lost some sense of taste and smell. This led to Hunter using a nasogastric tube to help him receive nutrition and gain weight. Whilst having the PEG has not enticed Hunter to eat, his mum Amanda is grateful for it, as it gives him the nutrition he needs.
Rory has had a nasogastric tube since birth and is on the waiting list for a gastrostomy/jejunostomy. He has several disabilities including spastic quadriplegic cerebral palsy, refractory epilepsy, global developmental delay, cortical vision impairment, hearing loss, gastroparesis and severe brain injury.
He cannot safely swallow due to his brain injury. Coupled with his gastroparesis diagnosis, Rory has significant difficulties in maintaining his nutrition status and has struggled since birth to grow at a healthy rate. Rory is frequently unwell. Each time, he has a regression with his nutritional status resulting in weight loss, increased vomiting and needing to reduce the rate of his feeds, which are delivered by a feeding pump. This means Rory must have prescribed multivitamin powdered formula to ensure he is meeting his daily nutritional needs and doesn’t become malnourished. It’s difficult for Rory to tolerate his feeds, even through a tube, as he also has significant issues with internal and external muscle spasms and excess secretions due to his cerebral palsy. He is frequently in pain during feeds and spends over 10 hours a day attached to his feeding pump to ensure he receives sufficient nutrition at a slower rate to minimise pain.
Hunter is one of the absolute highlights of Rory’s day and a welcome distraction from the pain.
