The O’Donnell Family

When people tell you that life can change over night, you think that you know what it means. Then something happens to your family and you understand exactly.

In 2021, Eloise O’Donnell was 10 years old. A happy go lucky girl who loved playing outside with her animals and enjoying time with her friends and family. A dream of one day growing up and becoming a veterinarian, where she can turn her passion into a career. Maybe, even one day owning her own horse.

Adored by her parents, Deb and Luke, along with her older sister and older brother, she has always been surrounded by working class parents who have always wanted the best for their children. They have worked hard to build a life in Gunnedah where their children have access to everything they need.

Life for the O’Donnell family dramatically changed in 2021 when Eloise began to suffer from seizures. This became incredibly concerning when she suffered a seizure that lasted for 5 hours. As parents and as siblings, this was the moment when they knew that something wasn’t right.

Eloise was admitted to Gunnedah hospital and then Transferred to Tamworth hospital where a series of tests were done. These tests were inconclusive and the O’Donnells were at a loss to what to do next.

The O’Donnells were referred to a doctor at John Hunter hospital who they refer to as a ‘miracle worker’. He opened his arms to their family and began the process of trying to determine what was wrong with their Eloise.

During this time, a number of heart-breaking things occurred. Eloise had to drop out of year 7 after only attending 18 days in year 6 as she could no longer be the happy go lucky 11 year old girl that her friends once knew her as. She lost the ability to be able to talk or engage with her fellow students as she constantly seizure, which makes her nerves in her face constantly moving which affects her speech becoming slurred not been able to eat certain foods and she no longer had the ability to take on board information like everyone else. Eloise, a much-loved girl from Gunnedah has since lost all of her friends and doesn’t have the confidence to socialize outside of their family home. A heartbreaking thing to watch as a family.

Over the last 2 years, The O’Donnells have spent their lives travelling between Gunnedah, Newcastle and Sydney. Eloise has had more tests that you can imagine. 4 lumber punctures, a series of MRI’s, EEG, PET scans and monthly IVIG’s infusions. They have been told numerous times that they ‘don’t know exactly what is wrong with her’ by multiple doctors. As doctors hadn’t been able to diagnose her illness, a series of medications were administered to see if it would reduce the number of seizures she was having. Each scripts costing 100’s or dollars each month, adding financial stress to the already horrible situation they were facing.

The good news is this. The ODonnells have access to Ronald McDonald house for accommodation when they have to stay in Sydney and Newcastle. Little Wings (which is an organization that flies sick children) has helped out a few occasions where they have had planned appointments in Newcastle or Sydney.

The bad news is this. Help from these organisations isn’t always available as it’s based on the availability at the time. With Eloise’s condition, there have been many moments where they have to pack up the car and drive to where the best help is which is 4-5 hours each way.

After 2 years of waiting and praying, Eloise has been given a diagnosis. One that as a brother, sister, mother and father never imagined only a few years ago.

Eloise has been diagnosed with Rasmussen Encephalitis. This is a very rare, chronic inflammatory neurological disease that usually affects only one hemisphere (half) of the brain. Although this isn’t known to be fatal, the effects can be devastating. The seizures are typically relentless, weakening the body with mental impairment often following.

Eloise has been scheduled for brain surgery in November where they plan to remove a piece of the right-hand side of her brain. If successful, her facial impairment should ease along with her seizures. Unfortunately, this isn’t going to cure her, but it should allow her to rehabilitate her speech so that she can communicate with others. The recovery for this surgery is 6 weeks. If unsuccessful, another surgery can be performed, however this would leave her blind in left eye and unable to walk again without wearing a brace on her left leg for the rest of her life as her left side will be left weaker than her right-side.

As most of us can only imagine, the financial stress of this, particularly over the last 12 months has started to take a toll. Fuel, medication, accomodation, air fares, food, supporting the family and the unexpected bills have started to add up.

They have applied for support from the NDIS multiple times, only to be told that they don’t have enough ‘evidence’ for them to be able to provide the care and assistance that they now need on a full time basis.

Let’s all ‘ Dig Deep for the O’Donnells’ to get them through these tough times. A little will go a long way.