The Story of Oli


I think we all need a little bit of Oli in us. Oli is like a bright shining star, overflowing with exuberance and joy.

His superpower is his happy personality. He is a true go-getter – and as Oli proudly declares, he is also a fast runner! Perhaps that’s why he’s always going million miles a minute, as his mom Elli can definitely attest.

What really stood out for me about this beautiful family is their positivity. It radiates from within and envelops all that comes into contact with them.

Oli’s mom, Elli, a nurse and midwife, knew things weren’t right when her prenatal scans showed problems with Oli’s bowels. Further testing came back with a diagnosis that changed everything: Oli had cystic fibrosis.

“We decided we had to stick together, not dwell on it and deal with anything and everything that comes our way.”

Following the traumatic ordeal of a ruptured bowel in utero, Oli was born 6 weeks early and was sent straight into surgery at PMH. Surgeons created a stoma, bringing part of his bowel outside his abdomen to let waste to pass out of his body, allowing his gut to rest and recover. A few days before Christmas, Oli’s stoma was reversed. Oli’s family were not allowed to hold him for a week, as he was ventilated and had cords and tubes all over him. They spent his first Christmas in hospital before being discharged on the 27th of December 2014.

The first year of Oli’s life was incredibly hard for him and his family. When they were finally able to bring him home from hospital, there were breastfeeding and weight-loss issues, medications to administer, and he would not sleep. Oli was used to the nasogastric feeds in hospital as a newborn and wanted to be fed constantly.

Trying to keep Oli healthy, while dealing with the shock of the diagnosis, all of the unknowns that came along with, and having to explain it to others was both physically emotionally draining.

“The biggest struggle was to find a positive cystic fibrosis story online. It was looking and reaching for the silver lining in this dark tumultuous time. One thing we learned was don’t Google.”

“Draining was an understatement during that very trying time” said Elli. “Oli practically lived in the carrier for the first year; it was a life saver for us and allowed us to hold him when he wouldn’t sleep, being able to enjoy the closeness and the bond”. Elli herself radiates positivity and warmth – it is easy to see where Oli gets his strength and bravery.

Things improved slowly over the first year as the family started to accept the diagnosis and the experience of Oli’s traumatic birth. They banded together and settled into a routine with Oli’s physiotherapy and medications. When Oli started solids, it was a huge turning point – he put on weight, slept better and overall became the happy smiling boy that he is. The wounds started to heal for the whole family as they embraced life with Oli.

Oli’s story is one of bravery and strength. Their favourite quote to give them courage through the toughest days has been:

“This too shall pass”

Oli lives life to the fullest and continues to do so every day despite having a chronic illness. He is a delightful little boy who takes everything in his stride. Nothing can hold him back! Not his daily cocktail of medications to keep him well, not even terrible tummy pains from his sensitive bowel or the daily physiotherapy routine that keep his lungs functioning well. He hasn’t required any admissions to the hospital since his traumatic birth as he is so good at doing his treatments and taking medications as needed. Oli is a hero with an inner strength beyond his years.

“We are staying positive and not letting Oli’s illness define him. It’s not all bad; it’s just one part of Oli. It does not define who he is. We don’t introduce him as – this is Oli, he has cystic fibrosis. He is Oli”

Oli is a sheer delight. He is very strong, always active, inquisitive, a problem solver and a real hard worker. Oli’s dad Ian and his mum Elli believe the biggest gift they have given Oli is Ruby, his little sister and best friend. She has been a healing joy for the whole family. Ruby and Oli are inseparable and can often be found in the backyard and the big outdoors getting into mischief. They love being outdoors playing in the sandpit, in the vegetable patch, with the chooks and truly enjoying life.

Ian is a fire-fighter, and Oli is obsessed with anything fire related. One of the highlights each week for Oli and Ruby is the visit to the fire station. Oli is an honorary fireman and has many fire trucks at home; his favourite toys besides his teddy. We hope that maybe, one day he might become the fire-fighter he dreams to be.

“Our biggest dream is for Oli to live a life unaffected by cystic fibrosis. To live without being limited and to not miss out on things”

You can purchase prints of Oli’s artwork here.




| Melissa Emmerson

Artwork by
| Dylan Nietrzeba | Dylan Nietrzeba Art | @dylannietrzebaart |

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