When Rachael Casella and her husband Jonathan welcomed their baby daughter Mackenzie in March, 2017, they couldn’t have been happier.
She was perfect.
After miscarrying their first child, Rachael had been expecting the worst during her second pregnancy. But the moment Mackenzie was born, she breathed a sigh of relief.
It wasn’t until Mackenzie was 10 weeks old that there was any indication something was wrong.
Concerned that her daughter was crying at the end of each feed, Rachael went to see a lactation consultant. While the consultant said there was no problem with Mackenzie’s feeding, she mentioned that she seemed ‘floppy’. At first, Rachael dismissed the comment, but when she looked over at a baby boy, roughly the same age as her daughter, who was on his tummy with his chest off the ground, she had a sinking feeling. Her baby didn’t do that.
Two days later, a paediatrician told the new parents he believed Mackenzie had spinal muscular atrophy (SMA), a terminal condition with no cure. Rachael and Jonathan would later learn their daughter had the most severe form.
In October, 2017, Mackenzie came down with a cold. Her lungs and breathing muscles weren’t strong enough to help her clear the mucus. Four days later, she passed away, lying between her parents in a hospital bed.
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Last Wednesday our beautiful daughter Mackenzie suddenly fell ill. For four days she fought like a warrior. Yesterday Mackenzie passed away peacefully laying between us surrounded by love and her favorite music. Our baby girl is gone. Our world has lost its brightness and colour. Instead our shooting star will be now and forever lighting up the sky. We are lost without you. Our world has no direction. We love you. We miss you. Thank you. #mackenziesmemories #changeformackenzie
Almost a year after the saddest day of their lives, Rachael and Jonathan are now dealing with a sickening issue no one should have to.
On Tuesday, the Sydney woman posted to Instagram, sharing that for the past three weeks, she’s been trying to shut down Russian Instagram accounts “impersonating my beautiful deceased daughter in order to scam people out of money”.
“They have taken photos and images of me, my husband, my parents and most importantly our beautiful baby girl Mackenzie,” she wrote.
“They call her Sophie and ask people for money to help her. Many people have lost money believing they are doing something kind.
“I have reported this abuse of a child’s image to @Instagram on more than 50 occasions. My family and followers have also reported these scams. The result has been abysmal. In most cases Instagram have not responded. In some cases they have responded and have deleted the accounts, however, the very next day they are reactivated or had a name change.
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For the past three weeks I have been dedicating my time to shutting down Russian Instagram accounts that are impersonating my beautiful deceased daughter in order to scam people out of money. They have taken photos and images of me, my husband, my parents and most importantly our beautiful baby girl Mackenzie. . For those of you who don’t know our daughter Mackenzie was diagnosed with a terminal illness, Spinal Muscular Atrophy, at 10 weeks old. On the 22nd of October 2017 she passed away in our arms at just 7 months and 11 days old. . Since Mackenzie was diagnosed I have used Instagram to document our life, not to gain publicity, but as a form of therapy. A place I could talk about our little girl to whoever wanted to listen, to celebrate her. We also used Instagram and our voice to raise awareness about SMA and to try to change how genetic testing is done in Australia in order to save other children’s lives. We campaigned the Government and our awareness led to a $500 million genomic project and a pilot program called Mackenzie’s Mission announced in the recent budget. . We know that sadly there are some awful people in this world, people with no souls, who will use our story to taunt us or troll us, but luckily our experience online, particularly on Instagram which is our main platform, has been relatively positive. However, for the past three weeks I have been fighting off despicable humans who have stolen Mackenzie’s story and identity to scam people out of money. They call her Sophie and ask people for money to help her. Many people have lost money believing they are doing something kind. . I have reported this abuse of a child’s image to @Instagram on more than 50 occasions. My family and followers have also reported these scams. The result has been abysmal. In most cases Instagram have not responded. In some cases they have responded and have deleted the accounts, however, the very next day they are reactivated or had a name change. . Continued in comments @kevin @mikeyk
“At this time the only mechanism to report such abuse is to use an ineffective form. I have tried to email Instagram on the one email I could find in the hopes of talking to an actual person but that email no longer exists. A useless frustrating form is all that exists. I have tried to find Instagram’s Sydney office address but cannot locate it. If I could speak to someone in their security area I could explain my situation, give them the long list of account names that are scamming, they could PERMANENTLY close these accounts and do a regular image search to find any other accounts online.”
Rachael said she was “disgusted” Instagram have failed to take the situation seriously.
“I wanted to do it quietly and move on because this hurts my heart,” she wrote. “But Instagram have left me no choice.”
“I am so tired. My family has been through hell this last year. Can we please just have some happiness? I am so sick of fighting people, organisations and systems. Enough!”
Rachael also included a list of all the accounts using her baby’s image, in the hopes that those who see her post can report them.
Speaking to Mamamia, Rachael said that when she first decided to share her story online, she knew she might receive backlash. She never expected, however, that her daughter’s story would be stolen and used for a scam.
Rachael described the situation as “beyond frustrating and heartbreaking, especially coming up to a year without Kenzie”.
“A place I go to to share my grief, connect with people and feel part of a community is hurting us,” she said.
“It isn’t good enough.”
Rachael – a fierce campaigner for raising awareness of pre- and early pregnancy genetic testing – said her Instagram account is set up with the aim of creating change. She doesn’t want sympathy and she doesn’t want fame, she just hopes she can play a role in helping genetic carrier testing become routine in Australia, so that future parents can be informed, and make their own choices.
To see her daughter’s story hijacked is painful, and she wants a solution to this disturbing scam.
You can report the Instagram accounts using Mackenzie’s photo here.