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

IT can often be difficult getting kids 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.

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 rather than tiredness, the youngster was in fact suffering from potentially deadly bone marrow failure.

Alongside the fatigue, she was pale and had picked up a few bruises and bumps.

However, soon, the 30-year-old noticed that the bruises weren’t fading as the days went on but becoming darker, eventually black in colour.

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 calling when she woke up with blood blisters all over her tongue, like lumps all over, and what we now know as a petechial rash - tiny, non-blanching red speckles.

"The GP sent us straight to A&E where she was admitted and that’s when things turned serious.

"Suddenly there was talk of it being related to her bone marrow and I immediately knew it was bad."

Little Elsie was blue lighted to Sheffield Children’s Hospital where the family were given the diagnosis of very severe aplastic anaemia with the only cure a bone marrow transplant.

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

Laura said: "She required transfusions of platelets twice weekly and blood transfusions roughly 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 spike - leading her to be admitted again.

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

This went on for two months and the constant cannulas and drips meant that her veins were becoming hard to access.

How to become a bone marrow donor

Anyone aged 16 to 30 years old can sign up to the Anthony Nolan database, while those aged between 17 and 55 years 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 could 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, what clots the blood, would be low and her pillow would be covered in blood from her nose and mouth bleeding.

"Her neutrophils, infection-fighting cells, were at zero which meant she had no way to fight off anything herself.

"This led to other nasty side effects such as mouth sores, inflammation of the gums and eventually, swelling which led to most of her teeth being covered.

"She went onto tube feeds as she lost all ability to take anything orally," Laura said.

LIFE THREATENING

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

"She became bed bound, unable to even move her head.

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

"She had daily transfusions of granulocytes - white cells that fight infection which gave her temporary neutrophils.

"Eventually, the line was removed and thankfully she started recovering.

"There was fear she wouldn’t make the transplant, or that it needed delaying."

After several family members being 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.

GET HELP

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

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

During the ordeal, Laura said Elsie has been amazing and has always 'smiling and dancing'.

Now Laura is sharing advice to other parents who might find themselves in the same situation as her family.

"Take all of the help you can get, find your village whether that be in person or virtually, it’s needed,” she said.

"Without people donating blood products and joining the bone marrow registry, Elsie wouldn’t be here.

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

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

Laura has documented their journey on her Instagram page.