Farewell for Riley as he grows his wings

Hi, my name is Kirsty Dahlin. I grew up with Sharna during our schooling years. To our surpise we became neighbours and best friends years later in 2021.

Unfortunately, my beautiful friend Sharna lost her little angel Riley to a chest infection on 22/05/2023.

Riley was a precious gift and was brought into the world 16/04/2015.

At just 6 months of age, Riley was formally diagnosed with Pontocerebellar Hypoplasia, where his huge battle began.

Pontocerebellar hypoplasia (PCH) is a heterogeneous group of rare neurodegenerative disorders caused by genetic mutations and characterised by progressive atrophy of various parts of the brain.

24 hours around the clock care was required in which the family embraced not asking for any community help. The family providing Riley with his best life possible with his daily barriers they faced. During 2017 until 2020 Riley remained in and out of hospital with some weekend release. Life always remained close to the Queensland Children Hospital until 2021. When they moved back to Kingaroy Queensland to be closer to family for continual family support.

Life was lived around Riley's continual care needs, Sharna never would venture far from home, as she had to keep a more sterile enviroment for Riley. He often suffered from continual lung infections, seizures and dystonia and he was tube fed to keep him nutritionally supported. This meant Riley remained on oxygen at most times.

Riley's battle continued for 8 years 1 month & 6 days to where Sharna had invested her upmost care and love to her precious boy. Pushing through fatique and facing the most challenging moments and never giving up on her Boy.

On the 16th of may 2023 sharna took Riley to the local hospital with a chest infection, Due to riley underlying condition sharna requested to be transferred to Brisbane. Sharna was told by the doctor that Riley was ‘To sick to be at the local hospital and not sick enough to be transferred’

On the 17th of may sharna called 000 as Riley had gotten worse, again Sharna requested a transfer and was told again that Riley was ‘not sick enough’ Riley was given oral antibiotics and the hospital offered to have Riley stay in Emergency. Due to the lights and noise, this was not suitable for Riley as it would have caused seizures.

On the 20th of May, sharna contacted one of Rileys medical teams in Brisbane and requested that Riley be transferred.

Riley was transferred on the 21st of May. Riley had been fighting a chest infection for 5 days with only oral antibiotics that sharna had told the doctors wouldn’t work.

Riley was tired, his body exhausted, and he was struggling to maintain his own airways, Riley was taken to the ICU not long after arriving in Brisbane and put on BI-PAP

On the morning of the 22nd, sharna was holding Riley and could see that he couldn’t fight this anymore before sharna even had a chance to tell the doctors they had decided that it was time.

Riley was transferred to the hummingbird house at 6 pm, and in just 2 short hours, he passed away in his mothers arms.

We are helping to raise funds for the family at their time of need.

The financial burden that has been left behind we would like to help lift this a little if we possibly can. I know my friend has been through more heartache than anyone would normally endure in a lifetime.

The financial costs of having a child needing 24-hour care with sharna structuring her life around Rileys care, unable to work as things towards the end became more difficult with more hospital stays and around the clock care.

We want to help Sharna in her time of need, so please help us support her through this difficult time.