I was heartbroken when spots on my daughter’s tongue turned out to be sign of killer disease

I was heartbroken when spots on my daughter's tongue turned out to be sign of killer disease

IT can often be difficult to get children to sleep.

So when mum Laura Cartwright noticed her little girl Elsie was struggling with fatigue, she put it down to early mornings and late nights.

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Mother Laura Cartwright knew something was wrong when her little girl woke up with spots on her tongueCredit: mediadrumimages/@ayorkshiremama
The little girl was just three years old when it became clear that she would need a bone marrow transplant

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The little girl was just three years old when it became clear that she would need a bone marrow transplantCredit: mediadrumimages/@ayorkshiremama
Her illness meant she not only had spots all over her tongue, but also a rash on her chest

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Her illness meant she not only had spots all over her tongue, but also a rash on her chestCredit: mediadrumimages/@ayorkshiremama

Elsie was just three years old at the time, and Laura said she looked pale and washed out.

She then developed black spots all over her tongue and a red rash on her chest.

But instead of fatigue, the youngster was actually suffering from potentially fatal bone marrow failure.

In addition to being tired, she was pale and had picked up a few bruises and bumps.

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However, the 30-year-old soon noticed that the bruises did not disappear as the days went by, but became darker, eventually black in color.

Laura, who lives in Doncaster, tried to get an appointment for her daughter in February this year but was told to call back if she got worse.

The mum said: “Two days later we managed to get an appointment after they called when she woke up with blood blisters all over her tongue, like bumps all over, and what we now know as a petechial rash – small, non-blanching red speckles

“The GP sent us straight to A&E where she was admitted and that’s when it got serious.

“Suddenly there was talk that it had something to do with her bone marrow and I knew straight away that it was bad.”

Little Elsie was blue-lit to Sheffield Children’s Hospital, where the family were diagnosed with very severe aplastic anaemia, with the only cure being a bone marrow transplant.

To survive this, the little girl must have medicine to prevent fungal and viral infections and antibiotics to help with bacterial infections.

Laura said: “She required platelet transfusions twice a week and blood transfusions about every seven to ten days.”

Then the family went through a period where Elsie could only manage 48 hours at home before her temperature would rise – leading to her being re-admitted.

She would then have to stay on antibiotics until she was well again.

This went on for two months and the constant cannulae and drips meant her veins became difficult to reach.

How to become a bone marrow donor

Anyone aged 16 to 30 can sign up to the Anthony Nolan database, while those between 17 and 55 can sign up to DKMS.

In both cases, you simply swab a cheek and send it back in a pre-paid envelope.

If you are a match for someone with a blood cancer or blood disorder, you can help save their life by donating your stem cells.

Click here to sign up if you are under 30, or click here for up to 55 years old.

“Between transfusions, Elsie would wake up when her platelets, which clot the blood, would be low and her pillow would be covered in blood from her nose and mouth bleeding.

“Her neutrophils, cells that fight infection, were at zero, which meant she had no way to fight anything on her own.

“This led to other nasty side effects like mouth ulcers, inflammation of the gums and eventually swelling that led to most of her teeth.

“She went on tube feeds because she lost all ability to take anything orally,” Laura said.

LIFE THREATENING

Unfortunately, Elsie later developed sepsis, a life-threatening infection made worse by her body’s lack of ability to do anything to fight it off.

“She was bedridden, unable to move her head on her own.

“She became so swollen that she put on a third of her body weight. Multiple scans every day, so many antibiotics and meds including a pump of fentanyl for pain relief.

“She had daily transfusions of granulocytes – infection-fighting white cells that gave her temporary neutrophils.

“Eventually the line was removed and thankfully she started to recover.

“There was fear that she wouldn’t make the transplant, or that it would have to be delayed.”

After several family members were tested for a transplant, including her two-year-old sister Maya, the family had to rely on strangers.

There were some complications with the matches, Laura said, but eventually they were able to find her a match.

The risks of transplant for Elsie included organ damage and loss of fertility – to name a few.

SEEK HELP

But the family said they had no choice but to take the risks.

“We almost lost her to sepsis, and after that the risks of death and the success rate changed dramatically, but it was her only option,” Laura said.

During the ordeal, Laura said Elsie was amazing and was always ‘smiling and dancing’.

Now Laura shares advice to other parents who may find themselves in the same situation as her family.

“Take all the help you can get, find your village, whether it’s personal or practical, it’s needed,” she said.

“Without people donating blood products and participating in the bone marrow registry, Elsie would not be here.

“My beautiful daughter was given a second chance at life thanks to her match and kept alive by blood donors.

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“People like Elsie still need donors and I can’t stress enough how important it is that if you can donate, please do.”

Laura documented her journey on her Instagram page.

Maya (left) was no match for her sister, so they had to rely on the kindness of strangers

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Maya (left) was no match for her sister, so they had to rely on the kindness of strangersCredit: mediadrumimages/@ayorkshiremama

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