Each day is a blessing. My beautiful, smart, kind 16-year-old girl had her whole life ahead of her, then the words ‘your daughter has a rare cancer’ changed her future and she began her challenging journey.
She has been incredibly resilient and stoic trying to sustain a life balance between health, friends, and family. We are all so proud of her. She is mature, beyond her years. A trip to our GP to investigate what we thought might be asthma changed our lives forever in July 2021.
Here’s us blissfully unaware of the journey and struggles ahead. We were swiftly taken by ambulance to Royal Childrens Hospital, straight to ICU after a mass was discovered in her neck, hiding beneath her collar bone, beginning to obstruct her breathing.
After a week in ICU, we were wheeled into the oncology ward, our Oncologist could confirm or worst fears, Charli had Synovial Sarcoma. If the team at RCH can remove the entire mass with a healthy margin, then we might be able to remove the cancer altogether. The surgery would be challenging and risky. It was in a tricky spot to achieve a margin around the mass. Charli had intensive radiation and chemo to prepare for the surgery. An intensive, risky surgery resulted in the mass being removed, they considered with a tiny margin, we were elated with the news, and so were the team at Royal Childrens.
Charlie recovered well. We thought we were in the clear. We celebrated Christmas that year feeling more grateful than ever, a routine scan in March confirmed our worst fears. The cancer had spread to Charli’s lung.
Charli had surgery to remove one large mass in the hope it would not spread. It spread into both lungs. Since then, Charli has engaged in two trials, the first making Charli so unwell she ended up with litres of fluid on the lungs and three surgeries to manage this. A challenging time for Charli, long periods of time in the hospital feeling very unwell. The second was tablets and Chemo, the disease was ‘stable’ however Charli had no quality of life, she was very unwell mentally and physically. We continued the tablet and took a break from chemo over Christmas to see if the tablet alone would suffice. For this reason and the fact the disease was ‘progressive’ we were sadly taken off the trial, this drug is not on the PBS.
We promptly started with a new drug, no chemo. This is where we are now, the cancer is in both lungs, however the growth has slowed with most tumors, and Charli is considered tentatively stable. We have been told these drugs will not hold the cancer for long.
Charli has a good quality of life currently, feeling well enough to do most things an 18-year-old should be doing, she has been incredibly stoic, pragmatic, and brave in the face of all this. A Car T trial at Peter Mac in Melbourne Australia had the entry age of 18, our plan all along was to bridge to this trial once Charli turned 18 in May just past. Unfortunately, they would not take her at a younger age. The trial was cancelled shortly before her 18th birthday.
We were disheartened to learn we have reached the end of the line for treatments available in Australia. We were advised of a T Cell treatment overseas, after some testing, we recently learnt Charli is a match for a trial. Charli has decided to take part in the trial at NIH Washington, Spearhead Trial Phase II. The first part is to go to Washington NIH and give blood, then we return to Australia. The blood is then engineered and about one month later we return to Washington for the T Cell treatment. We need to move swiftly, lung health and flying could become a barrier to getting the treatment.
I am so grateful to the staff at the hospital and to my family and friends who have been with us on this journey and my employer who has been incredibly supportive. I am very grateful to Charli’s friends who have ‘kept it normal’. Every day is a blessing. It’s difficult to reach out further and ask for help but sometimes we have no choice. I’m hoping with this page and Charli’s story we can raise some money to help us get from Australia to Washington DC and back, twice, so Charli can engage in this trial and possibly take the worry out of some expenses in Australia while we are in Washington.
Thank you for reading Charli’s story!
My Updates
Update
Friday 7th Mar Charli has travelled to the US twice to date, she is now 18! Spearhead Trial at the National Institutes of Health (NIH) Washington DC will see us heading back to the US later in the year. New t-cells have destroyed around a third of the cancer in her lungs! The cells are less active now but still keep her stable. NIH is looking after Charli so well, along with our Oncologist and team at RCH. Treatment was incredibly challenging. Thank you all for making this possible, we have used the funding for our two trips and expenses incurred. ShareThank you to my Sponsors
$25
Kerry Burgoyne
$100
Michelle Brown
Sending love, positive thoughts. Charli sounds like an amazing, strong, resilient young person. Xx
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Sue Proctor
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Anonymous
All the best Charli
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Kerry Burgoyne
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Anonymous
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Anonymous
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Anonymous
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Alison Smith
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Christine Dossantos
Hope all goes well Charli. You are a very brave young lady. Big 🤗
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Aidan Russo
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Belinda Sandham
$100
Leo Willis
$100
Shannon Cooper
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Lance And Claudia Sterling
Charli and Michelle we continue to think of you and pray for the success of your treatment Lance & Claudia Sterling
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Anonymous
$20
Amanda Jones
Amanda Jones - work with Jason Dickinson
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Milner Family Milner Family
Stay strong Charli, sending big hugs to you and the family ❤️
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Vic Camenzuli
Best of luck on the trial!
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Steven Beer
Love you Charli, from Erin, Alexis and Steve
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Sharon Michael
Good Luck Charli and family, from Erin’s Aunty xox
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Jodie Bray
Best of luck on the trial.
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Scott Clode
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Sarah Smith
$50
Brigitte Dickinson
Get better Charles xx
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Lisa's Lacies
Love you lots Charli, Lisa, Mark and Tommy xx
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Stockdale Family
Wishing you all the best.
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Peita Cooper
Love to you all and I’ve got everything crossed that theirs an amazing outcome x Peita
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Dimple Bhardwaj
Good luck! Thinking of you both and sending lots of hugs!
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Meg Yates
Sending hugs and get well vibes. Good luck Charli x
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Carmen Collins
All the very best Miss Charli, and big hugs to the family xx
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Carmel Spruhan
Not you, beautiful, smart and amazing Charli. Stay well. Love, Mrs S.
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Jo Monrroy
Sending lots of healing and love xo
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Kathryn Kidd
Wishing you all the best for a successful trial x
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Martine Ziino
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Tooba Aram
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Sharron Porter
Thinking of you all
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Vincent Cretella
Good luck thinking of you both
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John And Elly Oliver
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Neroli Blyth
Sending love & strength x
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Anonymous
sending sm love <3 stay strong beautiful girl
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Maxine Jardine
$200
Vicki Woolard
With your loving family holding you close & what is obviously your can do attitude, wishing you every chance of success Charli on this next journey.
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Jan Impey
Wishing you all the best Charli.
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Lisa Scott
Hi Charli & Michelle - sending you both lots of love xxx
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James Garzia
Goodluck ❤️
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Christine Dossantos
Hi Charli best of luck with the new treatment. My prayers are with you and your family. 💕🙏
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Anonymous
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Kate Plumridge
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Anonymous
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Anonymous
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The Murphy’s
With love from the Murphy’s
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Richard Stokes
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Kathryn, Sean, Coby, Jess,val, Bill Arbuckle
Thinking of you, sending lots of love. ♥️😘
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Lindsay Mckirdy
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Alison Robbie
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Nowella Ahlgren
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Anonymous
Sending lots of love for healing 💖
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Katie Elderton
Sending love and prayers Charli xxx ❤️
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Anonymous
$1.15k
Wolfpack Beers
All our love from the Wolfpack Beers families
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John Cass
$2k
Kiri Smart
With you all the way gorgeous girl
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Evelyn Schultz
Dearest Charli, You and your beautiful Mum are always in my prayers. You are an incredible young woman who has endured so much. Your courage and resilience are to be admired. Blessings and love, Evie
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Anonymous
Praying for you, Charli 🌹
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Carolin Poon
Best of luck Charli. Your strength is inspiring!
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Anonymous
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Margaret & Peter Dunbar
Thoughts are with you all, stay strong Charli.
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Simfix Electrical Services
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Tracey And Martin Fink
We're all behind you and your family
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Kylie Mcintyre
Thinking of you always beautiful girl ❤️❤️
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Anonymous
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Darren Stead
Good luck Charli, Darren
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Susan Harrigan
Margie sent me. ❤️
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Kerry Sinclair
Sending hugs to you Charli and all of the family. 🥰
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John And Cheryl Iser
Our best wishes for success here. You have managed so very well.
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Hilary Johnston
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Bleddyn & Rebecca
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Anonymous
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Helen Forsyth
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Andre Guerinet
Wishing you all the best Charli. From Andre and Annette Guerinet at Mulots Pâtisserie S.A.
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Leonard And Maree Castle
Good luck Charli, from Maree and Len (Shoreham)
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Sarah Kean
You're an amazing person Charli. Wishing you everything positive with your treatment in America. Xxxx
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Edan Montgomery
I’m following your story Charlie Girl and you are an absolute warrior. May God bless you dear lady xo
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Maria Handler
$250
Michael Bodnar
Stay positive and enjoy the small moments as much as the big
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Bailey Martin
$10
Anonymous
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Anonymous
$50
H M
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Bridie Drane Johnson
much love x
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Blair Cardwell
$50
Amelia Fink
$250
Green Scientific
$20
Sandra Brown
Hoping for your full recovery Charli
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Anonymous
$50
Jen Matheson
Wishing you all the best for your treatment and a speedy recovery. Love and blessings Jen
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Cody Baker
Good luck and I wish you all the best 🤍🤍🤍
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Adam Marshall
Sending you well wishes xx
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Salvatore Peluso
You got this Charli!! Sal, Carla, Dan, Lucas
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Jenny Hunt
$10
Carla Peliso
Here for you Charli🩵🩷💚
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Carla Peluso
Here for you Charli🩵🩷💚
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Chelsea Vella
Wishing you all the best for your treatment and recovery.
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Kaia Yeoman
ur amazing charli- best thoughts for you!!!
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Yilu Xu
Please get well Charli!! You’re so strong! 🫶
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Margie Rees
Luv you guys so much, Good luck Charli xxx
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Carla Peluso
Here for you Charli 🩵🩷💚
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Michelle Belbin
Stay strong Charli. Good luck with the treatment. ❤️
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Emily Dremel
Wishing you all the best in this journey. stay strong xx
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Anonymous
💕
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Sesi Fiadonu
$50
Pauline Brown
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Gail Page
we love you lots and lots
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Dawn Bruce
Best wishes
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Becky Nelson
Sending lots of positive vibes & hugs xx
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Joan & Tony Dickinson
All the best Charli
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Daniella Smith
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Pauline Dainty
I wish you the very very best.
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Anonymous
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Teighan Lee Hair And Makeup
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Anonymous
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Jeeny Ra
Wishing you for the best outcome Charli.
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Jenni Bourekas
Sending positive vibes your way xx
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Anonymous
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Anonymous
Donating as a client of Teighan Lee Hair & Make-up
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Maria Pintaudi
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Diane Hedin
Thinking of you Charli.❤️🥰 xx
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Sian Schramm
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Marlene Spiteri
Wishing you all the very best.
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Cheryl Pavlidis
Wishing Charli all the best xx Cheryl and George pavlidis
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Tania Brizzi-boyd
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Betty Dixon
All the best
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David Mashiter
All the Best Charli
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Ruby Bodnar
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Leanne & Chris Glenister
Our thoughts are with you. Love to you and your family
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Judy Valk
May this treatment give you the life you deserve and its success be available to anyone who needs it in the future.
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Anonymous
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Basil Brush
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Bek Bainbridge
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Sharon Murr
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Rodger And Jo Sharpe
Sending our love
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Philip And Richelle Leach
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Cathy & Stuart Mitchell
All the very best Charli ❤️
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Anne And Bryan Langworthy
Wishing you all the very best for successful journey Charli ❤️
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P & D Dunn
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Pam Elias
Good luck Charli
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Tina Bampton
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Eliza Surkitt
Lots of love to your and your family Charli x
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Anonymous
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Michael Yeomans
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Irene Mckirdy
Wishing you much love and luck in this journey 💖💖💖
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Boutcher Family Boutcher
Sending love and strength, from the Boutcher family xx
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Craig Young
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Marion Dennis
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Aimie Cribbin
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Rhonda Marshall
Sending love to you all. Stay strong 💕
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Lucy Matheson
Thoughts are with you all, stay strong Charli 🤍
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Richard & Kate Vines
With our very best wishes. Stay strong.
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Rebecca Valk
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Dickinson Famiky
We love you Charli.
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Bleddyn Dickinson
Thoughts and prayers Charl!
Lot's of love to you. 💕