“Throughout the day-to-day struggles of her illness, the side effects, and twists and turns, she has never lost who she is. Amara is so much more than her illness,” Amara’s dad Simon said.
If he had to choose one word to describe their funny, vibrant daughter — it would be resilient.
At just nine, Amara faces a tough and ongoing medical journey often needing round the clock care.
Her mum Sam said the path to a diagnosis was long and frightening.
Amara had been prone to illness as a young child, but by age six, she started feeling worse. She became unable to walk, and light, noise and movement caused her pain.
“She slept so much, it was like she was wasting away before our eyes, so I pushed for answers,” Sam said.
Doctors arranged blood tests and the very next morning the family was told to take Amara straight to the emergency department at the children’s hospital.
“We were told she was in end-stage renal failure, and was fading fast,” Simon said.
At hospital, Amara faced a whirlwind of tests and checks with nurses and doctors. It was a frightening time for her parents suddenly hearing words like ‘possible leukaemia,’ ‘kidney failure’ and ‘unknown cause.’
Further testing and a biopsy of Amara’s kidneys revealed a rare disorder called Nephropathic Cystinosis.
This is a life-long genetic condition where certain compounds build up in the body and can lead to chronic kidney disease, damage to the thyroid, bone marrow and eyes.
Amara was placed on dialysis to help her body do the job her kidneys weren’t able to, as well as medications and infusions to stabilise her condition.
“Bit by bit, she slowly perked as her little body recovered and life was breathed back into her,” dad said.
Hospital became like a second home. Amara had long, frequent stays and missed her friends at school, her sibling Daniel and being in the familiar surroundings of home. Her treatment was often painful and overwhelming.
“At the start of our journey, Amara needed four to five people for both physical and emotional support for every blood test or needle. Emotionally, it was an absolute struggle for Amara, but she always showed so much resilience,” her dad explained.
The demands of hospital took its toll on family life with one parent always by Amara’s side managing medications, procedures and long stays away from home.
Amara has also undergone several surgeries for feeding tubes and catheters, as well as biopsies on her kidneys and bone marrow.
From the very beginning, Starlight has been there for the family.
“During Amara’s first hospital stay, she was transferred to the ward feeling really sick and scared. Then two Captain Starlights arrived with crafts and colouring-in and introduced us to Starlight TV. It was the first time Amara had smiled after days of misery.”
Since then, Starlight has been the “happy part” of Amara’s hospital journey. When she’s well enough, she always visits the Starlight Express Room where the loves facepainting, arts and crafts, playing games with the Captains or Minecraft with other kids.
“Giving a child who is going through horrible medical things, somewhere they can just be happy, and a place to look forward to, is like a light at the end of a tunnel; it does absolute wonders,” Simon said
One of the family’s happiest memories of hospital was when a WWE wrestling team visited the Starlight Express Room and Amara started chatting away and confidently taught them her favourite ballet steps.
To manage her illness, Amara is on a strict medication and dialysis schedule. She needs certain medications on a six-hourly basis, and others administered throughout the day and night through her PEG feeding tube.
Dialysis can last between 10 to 12 hours per day — often overnight at home, allowing Amara to sleep. She will need a kidney transplant in the future.
Much of the family’s routine is dictated by the demands of treatment and Amara misses out simple things like swimming or a going to the beach due to the infection risk. Nights are marked by the sounds of alarms for medications and dialysis management.
Her dad said given everything she faces, they couldn’t be prouder of how far Amara has progressed. She’s been able to attend school more often despite the side effects of her medications and is loving laughing and playing with her friends.
“Three years on, and Amara no longer needs help for blood tests. Seeing her sit there so bravely now for every needle has been a huge achievement. She’s so strong and positive which is amazing given how much she has to cope with just to survive day to day.”
Knowing Starlight will be there helps Amara cope with every next hospital stay.
“Without Starlight, there would be less to look forward to. A large part of Amara becoming braver and happier with the medical side of things, is because she knows she can go to the Starlight Express Room afterwards.”
Amara associates hospital with the fun she can have in the Starlight Express Room instead of fear and worry.
Simon said, “For kids in hospital, Starlight changes everything. Amara looks forward to every visit. Without Starlight, hospital wouldn’t be anywhere near as positive. The fun and activities in the Starlight Express Room helps kids to burn off energy or, if they can’t join in, they still feel included and happy. That sense of brightness, fun and hope is essential.”
