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Daily Mirror
Daily Mirror
National
Freya Coombes & Sara Odeen-Isbister

Girl, 4, diagnosed with potentially fatal illness after parents notice spotty tongue

The parents of a young girl who survived potentially deadly bone marrow failure knew something was seriously wrong when her tongue turned spotty.

Elsie Cartwright, now four, was rushed to hospital earlier this year where she received life saving blood transfusions before a bone marrow donor could be found.

At one point the youngster almost died of sepsis, but thankfully recovered and a generous person donated the bone marrow she needed.

Her mum, Laura, has spoken about the traumatic journey the Doncaster family went on, how proud she is of her daughter and how thankful she is to the "amazing" donor.

"Elsie was born a normal, healthy little girl," Laura explains.

"She has a little sister, six dogs, an obsession with cats and dinosaurs and a love for the outdoors."

But in February this year Laura, 30, said she noticed Elsie started to look pale and washed out. She was also struggling with fatigue; however, this was put down to early mornings and late nights due to Elsie struggling to sleep.

Then Laura noticed that when Elsie got a bruise, it wouldn't fade in the normal way.

Elsie was moved onto a feeding tube when eating became too difficult (mediadrumimages/@ayorkshiremama)
Mum Laura said her daughter has dealt with her illness in a way beyond her years (mediadrumimages/@ayorkshiremama)

She said: "As a typical clumsy three-year-old, she was having little knocks whilst playing. These would result in bruises, but we noticed as the week went on that these bruises weren't fading as normal bruises do but getting more and more black in colour."

Laura tried to get a doctor's appointment for Elsie as the symptoms started showing, but she was told to call again only if the symptoms worsened.

Two days later Elsie woke up with blood blisters all over her tongue and Laura managed to get a doctor's appointment. The spots were found to be a petechial rash, which appears as a result of bleeding and causes tiny, non-blanching red speckles.

Elsie's mouth and nose would sometimes bleed profusely (mediadrumimages/@ayorkshiremama)

"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.

"She was instantly given a transfusion of platelets and 'blue lighted' to the specialist oncology and haematology unit at Sheffield Children's Hospital."

The next day, Elsie was given a bone marrow biopsy and fitted with an a nasogastric feeding tube (NG) as well as cannulas in her arms and feet.

A week later Elsie was diagnosed with Very Severe Aplastic Anaemia, or bone marrow failure.

The only cure was a bone marrow transplant.

The youngster developed rashes as part of the disease (mediadrumimages/@ayorkshiremama)

While waiting for the transplant Elsie was given medication to prevent fungal and viral infections, as well as antibiotics to prevent bacterial infections. She also had to undergo platelet transfusions twice a week and blood transfusions every seven to ten days.

"We went through a period of time where she would only manage around 48 hours at home before she spiked a temperature to 38 c and she would be admitted back into hospital for IV antibiotics until well"

"This cycle of home for a day or two and then readmitted went on for around two months."

When her platelets were low, Elsie would wake up with intense bleeding from her nose and her mouth.

Also, her neutrophils, the cells that fight infection, fell to zero, leading to nasty side effects such as mouth sores, inflammation of the gums and swelling so bad that her teeth became covered by her gums.

Elsie with her little sister Maya (mediadrumimages/@ayorkshiremama)

Elsie was moved more permanently onto a feeding tube as she was unable to take anything orally.

Two weeks before her transplant was due, she had a new central line fitted for more IV access but 48 hours after the surgery the youngster developed sepsis, a life-threatening infection made even worse by her body's lack of ability to fight things off.

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

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

Doctors feared she wouldn't live to make the transplant but thankfully Elsie slowly started to recover.

Once the family knew Elsie needed a transplant they started the hunt for a donor - an extremely stressful process, Laura explains.

Initially Elsie's younger sister Maya, now 22 months, was tested, as siblings have a 50/50 change of being a match, but it turned out she wasn't a match.

Elsie remained positive throughout her difficult journey said mum Laura (mediadrumimages/@ayorkshiremama)
Elsie spent two months in hospital (mediadrumimages/@ayorkshiremama)

"It was scary to think we would have to make the decision to put such a young child through being a donor but knew if she was old enough to make the decision, she would want to save her sister.

"Maya wasn't a match in the end which was devastating but also a relief she wouldn't go through it."

"That's when it got scary. We then relied on a complete stranger to be a match for Elsie and then to still want to do the donation and be in a position to be able to. It was terrifying.

Laura turned to social media, where she had already been sharing Elsie's journey and encouraging people to give blood.

Eventually they found someone who was a match and happy to be a donor.

"She got a second chance at life thanks to the most selfless act carried out by the most amazing person," Laura said.

Doctors explained to Elsie's family that the transplant would come with risks, including life-threatening ones.

"We had no choice but to take the risks. Without a transplant, Elsie would eventually have suffered an infection that she couldn't pull through."

Elsie is recovering well and meeting the milestones she needs (mediadrumimages/@ayorkshiremama)

On May 24, 2022, Elsie received her stem cells, or as Elsie calls them, her 'magic cells'.

The youngster is now meeting milestones and recovering well and it is hoped she will remain in remission, going from strength to strength.

Laura said her daughter has dealt with the whole experience in a way beyond her years.

"Elsie has an incredible understanding despite her age. We have been very honest and open with her all the way through.

"She knows she has poorly blood and understood why she had platelets and blood transfusions, she called it orange juice and jam."

The feeding solutions and medicine Elsie has to take on a daily basis (mediadrumimages/@ayorkshiremama)

The mum of two also says she also been very positive the whole time.

"During all of this, she's always had a way to find a smile, dance, sing and be silly.

"We found ways to entertain one another during our two-month isolation in hospital. Hospital room obstacle courses, making a den in the shower whilst eating cupcakes, painting our faces, bubbles, drip stand waltzing. It's amazing what you can come up with."

Laura hopes Elsie's story will encourage people to donate blood and more.

"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."

To follow along with Elsie and see her journey, visit her Instagram @ayorkshiremama

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