Nothing can prepare you for the terror of watching on as your young baby suffers an uncontrollable seizure.
Yet this is exactly what parents David and Jenna faced as eight-month-old Aria had an unexpected seizure lasting an agonising 45 minutes. Rushed to the emergency department, little Aria was intubated and transferred to the ICU.
Initially doctors hoped that Aria had suffered from a one-off seizure brought on by a quickly rising temperature, but unfortunately Aria’s seizures continued.
“It was heartbreaking to see our little girl go through something that seemed uncontrollable. It is extremely confronting and frightening,” says Aria’s dad David.
Aria’s seizures would come as often as 6-8 weeks and would last over 10 minutes each time. She would require rescue medication to bring her back around after every episode.
After numerous tests, Aria was diagnosed with Epilepsy at 18 months old. While Jenna and David were expecting the diagnosis, hearing it said out loud for the first time was still frightening, and in dad’s words “came with a million more questions and unknowns”.
Aria’s epilepsy diagnosis meant the family has had to adapt their lives to ensure her safety. Given something as minor as a common cold can trigger an uncontrollable seizure for Aria, family and friends are often asked to stay away if unwell. Childcare has also been out of the question due to Aria’s immune system, leaving mum Jenna no option but to work part-time so she could also care for her daughter.
Despite her medical challenges, Aria is a happy and funny four-year-old who loves to play with dress ups, Barbies and makeup. The ultimate in good times is the regular “dance parties” she has with Jenna, and adored little sister Lexa, where they all dress up and dance to music videos in the loungeroom!
Having been on three types of medication per day since she was just 12 months old, Aria’s immune system is slowly building and she is looking forward to starting Pre-K next year.
For David and Jenna, managing life with a child that has a neurological disorder has taken its toll.
“It’s taken us some time to find a routine, but there is always a curve ball and it’s a constant challenge. Having seen Aria in some pretty confronting situations, my wife and I have both struggled with anxiety and PTSD”, says David.
Being so young, Aria has struggled to understand what is happening to her and why. She is often overwhelmed by the constant medication changes, blood tests and scans she regularly endures. Recently Aria celebrated her fourth birthday being discharged from the ICU after a fortnight in hospital.
As a young family going through the ordeal of continual hospitalisations, David and Jenna have been so thankful for the brightness Captain Starlight has brought to their lives.
From the brief interactions they had with Captain Starlight when Aria was a baby, to the enjoyment she gets from the Starlight Express Room, the family have been uplifted by their Starlight experiences.
“It’s truly amazing what a difference Starlight has made to Aria, and also to my wife and I . The Captains really know how to make an impact by lifting the spirits of kids, and also their parents, and taking the focus off truly challenging times.”
In the Starlight Express Room Aria loves to see the Captains put on a show. As parents, watching Aria laugh and play with the Captains brings a happiness to David and Jenna they never expected to find within the challenging hospital environment.
To those who support Starlight in delivering these programs to sick kids and their families, Aria’s parents say;
“Thank you to everyone who supports Starlight. They do an amazing job of bringing happiness and laughter to families and their kids going through sickness, illness or disease. No donation is too small and will truly go a long way in supporting Starlight and the work they do to make kids smile during these difficult times.”
