Helping Hendrix

Hendrix’s Story

46024294_1583644071145176_r.jpegSaturday 9th November 2019, the day that our world was turned upside down and our hearts ripped out from our chests.

The day Hendrix had to fight, fight for his life and fight to come back to us and he is still fighting today 4 months later. The day our lives stood still but the world keep moving.

After a morning of having the time of his life with his friends and family, Hendrix collapsed suddenly and suffered from a couple of seizures. His body and brain had shut down to protect itself.

We were rushed to Prince Charles Hospital via ambulance and straight through to the resuscitation room where he was intubated and had a team of doctors and nurses keeping him alive.

A CT scan showed that Hendrix had a bleed in his brain and the doctors told me that he needed to be transferred to Queensland Children’s Hospital for emergency surgery and that I was not to leave his side as he may not make it through.

This was one of the hardest things to have to tell my husband and our families. We had friends and family meet us at the Queensland Children’s Hospital and were advised our other children should be there so they would have the opportunity to say goodbye to their brother. I stayed with my boy until they wheeled him into surgery, literally straight out of the ambulance and into the operating theatre. I kissed him goodbye and told him I loved him and then it was all in the surgeons hands to save my baby.

We waited for what felt like eternity, but a few hours later the Neurosurgeons came and told us the devastating news that they had found a tumour in Hendrix’s mid-brain the size of a golf ball, the tumour had bled which was what caused Hendrix’s brain to shut down. Hendrix had two drains put in his brain to relieve the pressure and drain excess brain fluid and blood.

Over the next few months Hendrix had multiple brain surgeries - biopsy, removal of some of the tumour, removal of external drain and an internal shunt put in. Along the way there have been a few complications, tests on tests on tests and some extended visits to ICU, but he is here with us today and we are grateful.

Through all of this we have always remained hopeful that our beautiful boy would come back to us the same kid that went to the swimming pools that Saturday but a few weeks ago doctors gave us the heart breaking news that Hendrix will never be the kid he was before this happened.

There is no real answer to how well he will recover but the doctors are certain that our boy will not fully recover.

He has major damage to the highway of his brain (hypothalamus), this controls all of our major functions - temperature, breathing, speech, heart beating etc. he also has damage to his pituitary gland which controls all of our hormones and he is on a lot of replacements for this.

Basically the motherboard of Hendrix’s brain has been damaged and with that there has been damage to the pathways that send messages to the rest of his body.

This has been a hard road for our family, but most of all for Hendrix - from an independent, able child to being trapped inside his own body. I see the fear and frustration in his eyes and it kills me that my baby is going through this and I can’t fix it, I think that is one of a parents worst fears.

Hendrix’s siblings have stood by and watch this all unfold in front of their eyes and I can’t imagine the thoughts going through their minds and the uncertainty that they must feel at times. Their brother collapsed in front of them and they know he hadn’t been the same since that day.

Hendrix will be in hospital for a long time to come and while he is working hard in rehabilitation, we will be working hard to get our home and our community ready for him, whatever it takes.

Hendrix, we will continue to celebrate you, your trials, your struggles, your successes and the milestones you achieve.

My PhatBoii, my beautiful curly haired boy, who gave the best hugs and had the biggest kindest, caring soul. What I wouldn’t give for one more I love you Mummy, one more of your famous hugs or to hear your beautiful laugh again.

We love you beyond measure, always and forever.

Donations

  • Anne Patterson 
    • $30 
    • 2 d
  • Desiree Soo-Choon 
    • $110 
    • 8 d
  • Anonymous 
    • $20 
    • 10 d
  • Zane Taylor 
    • $50 
    • 15 d
  • Anonymous 
    • $50 
    • 16 d
See all

Fundraising team: Hendrix’s Heroes (5)

Kristina Rewha 
Organizer
Raised $3,922 from 55 donations
Brisbane, Australia
Anna Rewha 
Team member
Raised $705 from 11 donations
Melissa O’Btien 
Team member
Raised $250 from 3 donations
Serena Ford 
Team member
Raised $210 from 5 donations
Melinda Pattinson 
Team member
Raised $50 from 1 donation
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