UPDATE!! down the bottom ❤️

hi my names amber and I’m sharing this on behalf of my brother and his family , hoping to raise some money and awareness to help them out ❤️ this is their story:

On the 29th April 2024 we presented to Ipswich Hospital ED as Jenson was not himself and refusing to feed for majority of the day. He fed while we were there once so they discharged us home saying he was fine.

Fast forward 2 days later (1st May) and we felt he was getting much worse even with feeding so we presented back to ED. They were about to discharge us when one doctor noticed he was breathing quite heavily and had an increased work of breathing. We were told possibly pneumonia, then after blood test possibly sepsis due to his numbers. So they performed an X-ray which showed what they thought to be tumour (not correct). However an ultrasound further showed dilated cardiomyopathy (enlarged heart). We were then sent straight to the PICU at QCH in an ambulance.

It wasn’t until the next day when a CT scan and Cath lab was completed that we were informed Jenson had ALCAPA which he was born with. Upon putting him under anaesthetic he unfortunately had a 2 minute cardiac arrest and was put straight onto ECMO before being spoken to by the amazing surgeon who said he would be taking him straight in for emergency open heart surgery.

Fast forward 2 months later with Jenson doing amazing, kicking goals and about to be discharged when at 3am on 28th June (my birthday) he went into cardiac arrest again, this time for an extended period of time

He was put straight back onto ECMO and still no one knows why it happened when he had been doing so well.

Unfortunately due to the extent of the arrest he now has received a diagnoses of severe HIE (hypoxic-ischemic encephalopathy, in simple terms lack of oxygen to the brain). The future still remains unknown if he will be severely affected or the neuroplasticity will help him overcome things but we want to give him every opportunity we possibly can to help his brain form these pathways and allow him to do things we were told he never would.

UPDATE!

We recently just completed our first intensive therapy at the Gold Coast and Jenson did amazing! He was kicking goals and already doing things we never thought possible. We couldn’t be more grateful for the opportunity at Centre of movement.

We are booked in for another one in June so are hoping to continue raising funds as it’s another $8000 course and accomodation for this time is going to be around the $5500 mark