Located 2,750 kms northwest of Perth, surrounded by the Indian Ocean, is the Cocos (Keeling) Islands.
It’s these Islands, that the Elman family call home.
There is a small clinic (hospital) on the Island comprising of 4 nurses and 1 doctor.
When Zathiyah (affectionately nicknamed Thiyah, by her family), was born, the clinic would not have enough resources to help her.
Zathiyah was born with Pyruvate Dehydrogenase Deficiency. This health condition is characterized by the buildup of lactic acid in the body and a variety of neurological problems.
For Thiyah, it meant that she had very weak muscle tone.
It would be a few years before the family would find out the name of the diagnosis and get Thiyah the help she needed.
When the family first went to the clinic on Cocos Islands, Thiyah was able to walk and talk – but she didn’t have any weight bearing.
As there was no pathology on the Island, the family was flown from their home on Cocos Islands, to Princess Margaret Hospital in Perth, in order for further testing to be done.
In their very first consultation, the doctor noticed that Thiyah’s eyes were rolling back as if she was having a seizure.
Her breathing was abnormally shallow.
They moved Thiyah to the ICU instantly.
Because of the complexities of Thiyah’s condition, her skin biopsy and muscle tissues was sent to the Netherlands for testing.
Once the results came back, the family were finally given Thiyah’s official diagnosis.
She was immediately put onto a ketogenic diet, which is a high-fat, adequate-protein and low-carbohydrate diet. Meaning she ate more of the foods her body was able to process.
Thiyah’s journey from her diagnosis was not a smooth one. Her family would be required to travel back and forth between Cocos Islands and Perth for several years.
In 2013, whilst in Perth, she had a metabolic stroke and was placed in the ICU for 6 days.
An MRI indicated ‘quiet’ brain activity.
From this day, Thiyah could no longer verbally talk or move. She would require full occupational therapy and a wheelchair.
“Thiyah was in the ward for a long time, but our family was always together,” said Zaina.
“It’s important for us to be together, because between my husband and I, we share the support of Thiyah. She requires a full-time carer.”
Thiyah’s therapy won’t ‘end’, she needs training to help her learn how to use her hands and communicate with the device that is connected to her wheelchair.
Although Thiyah can understand everything that is being said to her, she can’t verbally communicate back – which is what the device assists her with.
The family misses home, but Mum – Zaina - says they are giving Thiyah a better chance of a quality life here.
“We don’t get the level of help on Cocos Islands as we do here from allied health workers, as there just isn’t the funding.”
Zaina says the family has felt safe at the House in Nedlands during COVID-19, but it was hard to be separated from her husband and son, longer than normal due to quarantine enforcements.
“Elman went home with Zee (Thiyah’s younger brother), to Cocos Islands, on the 29th of February. They came back on the 10th of April, but because of COVID-19 and the restrictions, they had to isolate for 14 days. I didn’t see Elman or Zee for over a month and had to care for Thiyah on my own,” said Zaina.
Zaina describes Thiyah as ‘unique, cheeky and beautiful.’
Since 2012, Ronald McDonald House Charities has been the Elman’s home away from home for 577 nights across 21 different stays.
To this day, Ronald McDonald House Charities WA keeps the family of 4 together whilst Thiyah undergoes critical treatment that is not available on her home in Cocos Islands.
For over 8 years, the House has served as a much needed support system for the family, and it will continue to be, for as long as necessary.
