Amara’s mum Samantha had a pressing feeling that her daughter’s health was not as it should be. A persistent ear infection plagued the normally bubbly six-year-old, but Samantha feared there was more to Amara’s condition.
A lover of unicorns, craft, and a great op shop find, Amara began to lose a bit of her usual sparkle, so Samantha requested further testing be done.
When the local GP ran a blood test and sent them directly to the nearest hospital, her worst fears were realised.
Hospital tests revealed that Amara had a bacterial infection, and devastatingly, that her kidneys were failing. Further testing found Amara has a rare and serious genetic condition called Cystinosis which had caused her shocking condition.
“I was unbelievably scared when they diagnosed her with kidney failure” recalls Samantha “I didn’t know what that would mean for her. When we got the Cystinosis diagnosis it was actually more of a relief. At least we finally had an answer on what was making her so sick, and we knew what we were flighting.”
While Samantha and Amara’s dad Simon were relieved to have a diagnosis, the level of care Amara needed suddenly turned the family’s lives completely upside down.
Undertaking dialysis at home allows Amara to have much greater flexibility than having it in the hospital, but it does have its limitations which have impacted the entire family.
While Amara used to love swimming and trips to the beach, the family now steer away from these as Amara is no longer able to swim.
Samantha had to give up her job due to the frequency of Amara’s appointments, and her ongoing care needs. With the whole family’s schedule is arranged around Amara’s care, so it’s become increasingly difficult for them to do so many of the things they used to take for granted.
For Amara, it’s been particularly difficult having to miss so much school, and so many opportunities to play with her friends. “She struggles to understand what is going on, and why she is different from all her friends,” says Samantha.
Since her diagnosis Amara has become increasingly emotional. She often has nightmares, and is very attached to her mum and dad, and to her older sister (and very best friend!) Tiaan.
From the very first day of Amara’s hospital journey however, she’s had a very special friend by her side to help her through her toughest times.
The Captain Starlights, or “The Superheroes” in Amara’s words have been the distraction Amara, and her entire family, have needed to cope with their new medical reality.
“Starlight saved our sanity,” says Simon. “Even on the very first day, when everything was still so up in the air, Captain Starlight came to visit Amara and managed to put a big smile on her face.”
Since that day, Amara has loved visiting the Starlight Express Room whenever she has been able. During the times Amara was staying in the hospital, the Starlight Express Room was a great way to break up her day, and give her an escape from all the doctors and medical equipment that had suddenly become a part of her world.
When Amara wasn’t able to leave her room, she loved to play along with the games of Bingo running on Starlight TV.
As an outpatient, Amara often has long days of appointments at the hospital but is always happy to go along, as long as a visit to Captain Starlight is built into the day!
“Without Starlight, Amara’s hospital experience would have been so tough. When she’s had a particularly hard day, she loves going to the Starlight Express Room to play games and see the Captains. She positively glows when she sees a Captain in the wild!”
Perhaps one of the most amazing moments for Amara and her family was when they got to spend time with two “superheroes” at once... getting to meet none other than the incredible Ed Sheeran, with Captain Starlight by their side!
"It was so exciting to meet Ed Sheeran, and see his concert,” says Samantha. “Our family needed a positive at that point in our life, and it was just the most amazing experience. It helped the world look brighter again. The Captains really do a wonderful job of keeping everyone’s spirits up.”
To those who support Starlight, Samantha and Simon would like to pass on this message:
“Plain and simply, without the Starlight Express Room and the amazing Captains, Amara’s whole experience would have been a lot less bright. The positivity and joy they bring have helped Amara and our family through our lowest points. Thank you so much for your support.”
