Why I’m doing it
@Charlies_Big_Heart_
On the 15th Sept 2022 Charlie Binnington was born. After a very normal pregnancy with no signs of problems he was taken away to the NICU with laboured breathing and found to have high lactate in his blood. Charlie was later transferred to PCH where he was given an array of tests to see what was wrong which all came back inconclusive. After 12 days in Hospital Charlie was sent home with a follow up appointment in a few weeks time.
At the appointment Charlies doctors noticed his heart wasn't beating as it should be, rushed for an echo & ECG and he was diagnosed with dilated cardiomyopathy, but the reason for this was still unknown. Charlie was admitted back to Hospital to the ICU where he spent another week with more testing & a rapid genetic screening test. With results pending, Charlie was sent home with his family under Palliative care and given days or weeks to live.
A few days later the results from the genetic test where back & he was diagnosed with a rare genetic syndrome called Barths. Barth syndrome is a rare (1 in 400,000), life-threatening genetic disorder, which primarily affects males. It is caused by a mutation in the TAFAZZIN gene, resulting in an inborn error of phospholipid metabolism, affecting many systems of the body. Charlies Mum, Kelly was later found to be a carrier of Barths, unbeknown to her as she also has a healthy 4 year-old daughter Ella, but Barths only affects males. This was a hard pill to swallow, the feeling of guilt of passing this horrific gene mutation down to her newborn boy.
Charlie & family were once again admitted back into hospital under the care of Cardiology & Metabolic doctors and put on medication to try and help support his heart. Charlie spent the next four months in and out of PCH, had various appointments, blood test. infusions, nasal gastric tubes, IV's and medications and the whole family were so hopeful that Charlie will go on to live a hard but stable life with his big sister.
Unfortunately on the 21st January 2023, at four months old, Charlie passed away in the comfort of his own home surrounded by family. His heart couldn't keep fighting and decided it was his time to fly.
We miss our boy so much and we are now trying to create awareness about all different types of genetic mutations that occur in so many newborns and children. We had no idea that what was coming our way when Charlie was born. With such a normal pregnancy, no family history of any issues & a healthy daughter this sort of thing was never on our radar. Gene Therapy is the next big thing to try and help all the boys in the world with Barths and other children with genetic mutations & allow them to rid the awful symptoms it entails.
Any donation big or small can help save lives.
In honour of our boy, we have started a inclusive support group for any families who have experienced pregnancy and child loss
www.charliesangelsfoundation.com
Thank you to my Sponsors
$20.88
Anonymous
$28.19
Denise Bibby
💜
$28.19
Anonymous
$50
Lot Six Zero Aveley
$700
Wembley Sos Golf Club
From Wembley SOS Golf Club
$759.60
Bhp Ipro Teams
$400
Lot Six Zero
$15
Novita Mulyani
You deserve the best in life. God bless 🫶🏻🤍
$79.97
Tyler Binnington
$52.20
Chris Burke
$50
Lee Cochrane
$52.20
Amanda Thomason
$365
Lot Six Zero Yokine
$350
Lot Six Zero Aveley
$350
Lot Six Zero Innaloo
$41.76
Kersti Rundle
$20.88
Saravanan Perumal
$52.20
Kathryn Clarke
In memory of darling little Charlie 🧸 🩵
$52.20
Marlene Cardenas
$15.66
Ashleigh
$20.88
Rachel Martin
$52.20
S&c Pereira
For Charlie Bear 💙
$50
Fi & Megs
We love and miss you Charlie Bear 🩵🧸
$52.20
Jeff And Chris Bauer
$65.77
Tyler Binnington
$104.40
Margaret Mcewan
$15.66
Philippa Farris
$10.44
Renee
$208.80
Airmaster Wa
$208.80
Matt Wisniewski
$31.32
Emily Colwell
$28.19
Anonymous
$30
Lachlan Hill
$10.44
Anonymous
$104.40
Auntie Hayley
Forever telling your story to raise awareness and funds to find cures. We miss you Charlie bear 🐻💙 Auntie Hayley, Uncle Trent, Taite and Jaxtyn 🫶🏼
$50
Jonathon Sorci
$28.19
Renee
$50
Rekha Pindolia
$208.80
Kylie Maslin
$52.20
Robert Bigmore
For Charlie - my heart is with you and your family. Thinking of you all at this time
$52.20
Jacki Blair
$52.20
Clare Flint
🩵💙🩵💙
$104.40
Parker Family
Lots of love 💙
$20
Jacqueline Siew
Keep fighting, don’t give up. Light will shine through.
$52.20
Angela Cady
💙
$101.27
Mike Mcgreevy
$100
Lysh & Steve
We love you Charlie Bear 🤍💙🐻💙🤍
$20.88
Cassie Cowdroy
Sending Love and strength to you all.
$150
Glen Pope
$52.20
Betty
$261
Paul Cooper
A very unkind bolt from the blue. Playing golf with Glen I understand the angst & hope that you went through - I hope this donation helps in the fight to understand the how & why. Kind regards Paul
$52.20
Felipe Rodriguez
Thanks for sharing your story. I hope you find strength to overcome this sadness.
$52.20
Anonymous
$261
New West Foods - Venoutsos Family
Hi Kelly, Thanks for reaching out to us and we hope more research can be done to assist those affected by genetic diseases.
$52.20
Anonymous
$10.44
Anonymous
$400
Jodi Mcmurray
$50
Keith And Carol Barrow
$28.19
Adrian Martell
$208.80
Norbert Plaskota
$52.20
Bruce Mason
Hi Kelly, Sorry to hear your story and happy to donate. All the best Bruce
$250
Aspect Accountants And Advisors
Thanks for reaching out Kelly and sharing your story. From all of us at Aspect Accountants and Advisors.
$52.20
Kimberley Sprigg
$31.32
Brady Sinclair
💙
$101.27
Jennifer Binnington
$50
Claire Dewhurst
🫶🏼
$20.88
Julie Hawtin
$52.20
Steve Govorko
$104.40
Kelly, Tyler & Ella
Love you Charlie Bear
