Remembering Zayden

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On Thursday 6 May 2021, our little wonder warrior and 2020 Nine Telethon Ambassador Zayden, sadly passed away.  Zayden, Adele, Gary, and Zayden’s big brother Rylan have been a huge part of the Foundation family for many years and our love and thoughts go out to them all.

Zayden was only one week old when his mum, Adele, noticed something was different. At around three-weeks-old, Adele noticed his eyes started flickering, and his symptoms became increasingly evident from then onwards.

Zayden underwent extensive examinations and testing to try and establish a cause for his symptoms, and to give his condition a name. While the search continued, his symptoms continued to progress, and he was unable to eat well so a feeding tube was inserted.

Adele recalls being sent to the neurology department on one of her first visits to the hospital and feeling like she was in the wrong place – she couldn’t believe that her son might have a condition that serious.

Zayden received a diagnosis at two-and-a-half years old, of GABRB2 Genetic Mutation.

“The best way to explain Zayden’s condition is that he is trapped in a body that he can’t control, but cognitively he can understand quite a bit. He can’t do anything that he would like to do, like sit, roll, hold his head up, eat, and sleep,” Adele said.

Zayden spent a lot of time in hospital, and his family moved internationally and locally to ensure he had the best possible care.  His hospital stays ranged from days to weeks, with his longest stay at 156 days.  Most months would involve a visit to the Emergency Department, he had outpatient appointments every few weeks, with an admission every few months, and therapy five days a week.  When Zayden’s health deteriorated earlier this year, his family were visiting the hospital at least once a week.

During their many visits and stays in Queensland Children’s Hospital Zayden and his big brother Rylan were supported by several Foundation services.  From our Cuddle Carers when Zayden was just a baby to Kidzone visits and bedside play.

“These extra services were essential to us. As a little baby, when the Cuddle Carers came in was the only time, I was able to get to have a shower or a coffee.  Zayden’s big brother Rylan spent a huge amount of time hanging around the Hospital, but because of all the amazing experiences he has had, he saw the Hospital as a magical and exciting place to go.  The services provided have not only let Rylan connect with other siblings living similar lives who just get it but the services have given him something to go back to school and excitedly tell his class how he spent his holidays filming for Juiced TV.

It was not always fun and games and there were times where Rylan just had to sit and wait, and this was where the Patient Entertainment System really helped, and his all-time favourite place, the Book Bunker.  Rylan loves to read and sometimes when things were tough or boring being immersed in a book was his favourite place to be.  Bedside play was invaluable to us as a family, as Rylan was able to feel like he had someone to play with when everyone else was busy with Zayden. Letting Rylan have fond memories of our hospital visits has just been so beneficial to him emotionally coping with life as a sibling of a little brother who had a chronic condition.” Adele said.

Zayden participated in music therapy over a long period of time and benefited from this therapy each time he was admitted to Queensland Children’s Hospital. His music therapist provided opportunities for meaningful engagement, interaction, and quality of life. Zayden enjoyed these sessions and when able to, smiled, vocalised, and nodded his head to ask for “more” music.

When Zayden was admitted to Queensland Children’s Hospital, it was often in emergency situations, so his mum, Adele, never usually had time to bring toys with him. But the introduction of the CHF Playability Loans Library, allowed Zayden to use toys during his stays that provided familiarity, distracted him from pain and procedures, and eased his anxiety.

“The Children’s Hospital Foundation staff always seemed to know when Zayden was back in again, and they were aware that he was unable to leave his room, so they’d just give us a call and ask what he would like to play. He usually liked the same toy every time.  The introduction of the Playability Loans made such a huge difference in his life,” Adele says.

Brave Zayden went through a lot in his short life including surgery on his airway, MRIs, EEGs, blood tests, a portacath inserted into his veins, and a feeding tube. Then in February 2020 he had his biggest surgery – Deep Brain Stimulation Surgery – where he had two probes implanted into his brain, connected to a battery in his shoulder to help essentially reprogram his brain and stop his muscles from painfully contracting. The surgery gave him the ability to smile again, go back to school, sleep and be pain free.

We are truly grateful to Zayden and his family for sharing their story with us and for being part of the Foundation family.  We will always remember Zayden for his love of music and the bravery he showed throughout his life.