The mother who lost her daughter with SMA hits back to Instagrammers using her baby to get money

A mother (pictured) who tragically lost her daughter with SMA at seven months of age responded to Instagram accounts by posting pictures of her dead baby in an attempt to get money from strangers

A mother who tragically lost her daughter to Spinal Muscular Atrophy at seven months of age responded to Instagram accounts by posting pictures of her dead baby in an attempt to solicit money from strangers.

Rachael Casella, 34, and her husband Jonathan, from Sydney, were left with a broken heart last year, when Mackenzie was diagnosed with SMA Type 1 at ten weeks and then died at seven months.

When posting on her Instagram page, Rachael said she spent the last three weeks dedicated to "close Instagram accounts" posing as my beautiful dead daughter to swindle people with no money. "

A mother (pictured) who tragically lost her daughter with SMA at seven months of age responded to Instagram accounts by posting pictures of her dead baby in an attempt to get money from strangers

A mother (pictured) who tragically lost her daughter with SMA at seven months of age responded to Instagram accounts by posting pictures of her dead baby in an attempt to get money from strangers

Rachael Casella and her husband Jonathan were left with a broken heart, when the baby Mackenzie (pictured) was diagnosed with SMA type 1 at ten weeks and died at seven months

Rachael Casella and her husband Jonathan were left with a broken heart, when the baby Mackenzie (pictured) was diagnosed with SMA type 1 at ten weeks and died at seven months

Rachael Casella and her husband Jonathan were left with a broken heart, when the baby Mackenzie (pictured) was diagnosed with SMA type 1 at ten weeks and died at seven months

Rachael explained that she spent the last three weeks & # 39; closing & # 39; Instagrams (in the picture) & posing as my beautiful deceased daughter to swindle people with no money & # 39;

Rachael explained that she spent the last three weeks & # 39; closing & # 39; Instagrams (in the picture) & posing as my beautiful deceased daughter to swindle people with no money & # 39;

Rachael explained that she spent the last three weeks & # 39; closing & # 39; Instagrams (in the picture) & posing as my beautiful deceased daughter to swindle people with no money & # 39;

"They have taken pictures and images of me, my husband, my parents and, most importantly, our baby Mackenzie," Sydney's mother said, along with photos of one of the accounts.

In sharing the background story of Mackenzie's baby loss, Rachael explained that her baby was diagnosed with a terminal illness, Spinal Muscular Atrophy, before she died in our arms with only seven months and 11 days old.

"Since Mackenzie was diagnosed, I used Instagram to document our life, not to get publicity, but as a form of therapy," Rachael said.

& # 39; A place where I could talk about our little girl who would like to hear it, celebrate it & # 39;

"They have taken pictures and images of me, my husband, my parents and, most importantly, our baby Mackenzie," Sydney's mother (in the photo: one of the accounts)

"They call her Sophie and they ask people for money to help her." Many people have lost money believing that they are doing something kind, "the 34-year-old man wrote about the accounts (pictured)

The 34-year-old woman said she has been using Instagram to raise awareness about SMA in an attempt to change the way genetic testing is done in Australia (photo: baby Mackenzie)

The 34-year-old woman said she has been using Instagram to raise awareness about SMA in an attempt to change the way genetic testing is done in Australia (photo: baby Mackenzie)

The 34-year-old woman said she has been using Instagram to raise awareness about SMA in an attempt to change the way genetic testing is done in Australia (photo: baby Mackenzie)

The 34-year-old woman added that she has been using Instagram to raise awareness about SMA in an attempt to try to change the way genetic testing is done in Australia.

"We know that, unfortunately, there are horrible people in this world, people without souls, who will use our story to make fun of us or troll, but fortunately our online experience, particularly on Instagram, which is our main platform, has been relatively positive. "Wrote Rachael.

However, she said that for the past three weeks I have been fighting despicable humans who have stolen Mackenzie's story and identity to scam people without money. "

"They call her Sophie and they ask people for money to help her." Many people have lost money believing that they are doing something good, "the 34-year-old man wrote.

Casella's partner (pictured with Mackenzie) has found her experience on Instagram largely positive

Casella's partner (pictured with Mackenzie) has found her experience on Instagram largely positive

Casella's partner (pictured with Mackenzie) has found her experience on Instagram largely positive

Rachael (pictured with Mackenzie) said she has "denounced this abuse of a child's image to Instagram more than 50 times"

Rachael (pictured with Mackenzie) said she has "denounced this abuse of a child's image to Instagram more than 50 times"

Your friends and family have done similar

Your friends and family have done similar

Rachael (pictured with Mackenzie) said she has reported this abuse of a child's image to Instagram more than 50 times, and that her friends and family have done something similar.

Rachael said she has reported this abuse of a child's image to Instagram more than 50 times, and that her friends and family have done something similar.

The anguished mother confessed that the "result was abstemious", and although "in some cases", "Instagram" responded and deleted the accounts, the next day they were reactivated or changed their name & # 39; # 39;

She said she felt like there was no other option, but to put him there.

& # 39; I'm so tired. My family has gone through hell this past year. Can we please just have some happiness? I'm so sick of fighting against people, organizations and systems. Enough! "Wrote Rachael.

Daily Mail Australia has contacted Instagram to comment.

& # 39; I'm so tired. My family has gone through hell this past year. Can we please just have some happiness? I'm so sick of fighting against people, organizations and systems. Enough! Said Rachael (pictured with his family last year on his trip to the snow)

& # 39; I'm so tired. My family has gone through hell this past year. Can we please just have some happiness? I'm so sick of fighting against people, organizations and systems. Enough! Said Rachael (pictured with his family last year on his trip to the snow)

& # 39; I'm so tired. My family has gone through hell this past year. Can we please just have some happiness? I'm so sick of fighting against people, organizations and systems. Enough! Said Rachael (pictured with his family last year on his trip to the snow)

WHAT IS SMA?

* Spinal muscular atrophy is a rare inherited genetic inherited disease that is characterized by the loss of nerve cells called motor neurons.

* The affected muscles not only include the muscles you see, such as the arms and legs, but also all the internal muscles, such as breathing, coughing and swallowing.

* The loss of motor neurons leads to progressive muscle weakness and wear.

* Spinal muscular atrophy is transmitted by what is known as autosomal recessive inheritance and for an individual to be affected by SMA; They need to have inherited an altered gene from their parents.

* A person in thirty-five unknowingly carries this gene.

Source: SMA Australia.

Rachael and Jonathan said goodbye to baby Mackenzie in October, at seven months of age, but not before they made a series of memories, celebrating each of their seven "months" in different places in Australia.

"Each month would follow a similar cycle," Rachael reminded FEMAIL previously.

"We had an appointment with his neurologist to see how he was doing, and then we were going on a trip somewhere for a week, before returning to Sydney to try to live a life as normal as possible for the rest of his life." month. & # 39;

At different points, the family of three visited Broome in Western Australia, Perisher, Tasmania, Cairns and Perth.

"We travel to the snow and we have beautiful memories of her standing in awe at the snow in Perisher," Rachael said.

"She saw the snow and caught snowflakes with her tongue." It was so cute, she was trying to figure out what it was.

The proud parents also took Mackenzie to Broome, where she had her first and only helicopter trip:

"She was very funny in the helicopter, she was tied to me and I only remember that she looked so confused," Rachael said.

Rachael and Jonathan said goodbye to baby Mackenzie in October, at seven months, but not before they made a series of memories, celebrating each of his seven "months" in different parts of Australia (photographed on his seven-month day )

Rachael and Jonathan said goodbye to baby Mackenzie in October, at seven months, but not before they made a series of memories, celebrating each of his seven "months" in different parts of Australia (photographed on his seven-month day )

Rachael and Jonathan said goodbye to baby Mackenzie in October, at seven months, but not before they made a series of memories, celebrating each of his seven "months" in different parts of Australia (photographed on his seven-month day )

At different points, the family of three visited Broome in Western Australia, Perisher, Tasmania, Cairns and Perth, as well as hosting a memorial at the Centennial Park in Sydney (pictured)

At different points, the family of three visited Broome in Western Australia, Perisher, Tasmania, Cairns and Perth, as well as hosting a memorial at the Centennial Park in Sydney (pictured)

At different points, the family of three visited Broome in Western Australia, Perisher, Tasmania, Cairns and Perth, as well as hosting a memorial at the Centennial Park in Sydney (pictured)

When Mackenzie was asleep, her parents (in the photo) carried out tireless campaigns to raise awareness about SMA at a national level: the couple wrote a letter asking that the genetic tests be introduced.

When Mackenzie was asleep, her parents (in the photo) carried out tireless campaigns to raise awareness about SMA at a national level: the couple wrote a letter asking that the genetic tests be introduced.

When Mackenzie was asleep, her parents (in the photo) carried out tireless campaigns to raise awareness about SMA at a national level: the couple wrote a letter asking that the genetic tests be introduced.

When Mackenzie fell asleep, her parents campaigned tirelessly to raise awareness about SMA at the national level.

WHAT ARE THE DIFFERENT TYPES OF SMA?

* There are four types of SMA, categorized by the severity of the disease and the age at which the symptoms begin.

* Type I, sometimes called Werdnig-Hoffmann's disease, begins to affect babies from birth to 6 months of age, and most babies show signs of the disease at 3 months. Some develop the disorder before birth. This is the most serious form of SMA.

* Type II, also called chronic childhood SMA, begins to affect children between 6 and 18 months of age. This form can be moderate to more severe.

* Type III, also called Kugelberg-Welander disease or juvenile spinal muscular atrophy, begins to affect children at 18 months of age or even adolescence. This is the mildest form of SMA in children.

* Type IV, is the adult form of the disorder. Most people affected by this type begin to have symptoms after the age of 35, and these symptoms get worse slowly over time. Because it develops slowly, many people with Type IV SMA do not know they have it until years after the symptoms begin.

Source: Children's health

Rachael wrote a letter asking that genetic tests be introduced, which were then taken to her mother by 275 members of parliament.

"We talk to politicians and medical professionals," said Rachael.

Since Mackenzie died last September, federal Health Minister Greg Hunt has also committed to helping them with the launch of the Mackenzie Mission: routine subsidized genetic testing and Pre-Implantation Genetic Diagnosis.

He told them that $ 500 million had been allocated for genomics, including the Mackenzie Mission.

"We broke down in tears when they told us about the Mackenzie Mission," Rachael said.

& # 39; Our little girl would have a legacy & # 39;

Mackenzie died on October 20, after four days in the Sydney hospital surrounded by Rachael, Jonathan and other members of the extended family.

"I remember it as clearly as I did not expect it to happen so suddenly," Rachael said.

"We had just returned from Tasmania, where we celebrated Mackenzie's seven days on a yacht.

"I remember being home and seeing that Mackenzie had changed color." I screamed for Mom and Jonny, and got him to breathe again before quickly phoning the ambulance.

The mother said she still has problems "when I hear ambulances now."

"When her neurologist saw her, it became clear that the expression on her face was not good," Rachael said.

"The next four days were a nightmare, he only had a common cold, but he was so weak that one of his lungs had collapsed and he had internal bleeding in his stomach.

"We slept with her in bed all that time, she did not look happy with all those masks on, she kept showing the pictures of nurses and doctors to show them how it could be."

Rachael remembers when her oxygen mask was finally taken as "the worst moment of my life."

"We saw that he slipped away, it was so difficult," Rachael said.

Rachael remembers when she finally took off Mackenzies' oxygen mask (pictured) as "the worst moment of my life"

Rachael remembers when she finally took off Mackenzies' oxygen mask (pictured) as "the worst moment of my life"

Rachael remembers when she finally took off Mackenzies' oxygen mask (pictured) as "the worst moment of my life"

Just before Mackenzie's death, Rachael and Jonathan started IVF with the hope of having a younger brother or sister for Mackenzie (pictured as family last year)

Just before Mackenzie's death, Rachael and Jonathan started IVF with the hope of having a younger brother or sister for Mackenzie (pictured as family last year)

Just before Mackenzie's death, Rachael and Jonathan started IVF with the hope of having a younger brother or sister for Mackenzie (pictured as family last year)

SMA IN THE POINT OF LOOK MEDICAL

* While there is no cure for SMA, there is a medication that helps increase motor function.

* Developed internationally, a new treatment called nusinersen is producing promising results, with 40 percent of babies in a recent blind test of several types of SMA that reach milestones such as sitting, crawling and walking.

* TGA is currently considering the drug to see if it is effective.

* However, the medication costs USD $ 125,000.

Source: A B C

Just before Mackenzie's death, Rachael and Jonathan started IVF with the hope of having a younger brother or sister for Mackenzie.

"Now we've had five rounds and so far we have not had any luck, which is an emotional torture along with the duel," Rachael said.

Now they are in their last payment cycle, raising money for the effort in GoFundMe.

"Jonny and I are not special people, we are totally normal and this can happen to anyone," Rachael concluded.

"We just want to enlighten and let the legacy of our beloved girl live forever."

To donate to the Casellas, and help them in their effort to make Mackenzie brothers, you can visit the GoFundMe page. here.

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