A TWO-YEAR-OLD girl tragically died following a minor operation – just hours after cuddling with her mum.
Her family has now set up a charity in her name, sending gifts of Easter eggs and chocolate to NHS nurses and police officers battling coronavirus on the frontline.
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Two-year-old Jess Moore had been battling a rare genetic condition, and had the minor operation to help her digest food.
She suffered from Wolf Hirschhorn syndrome, which causes delayed growth.
The young girl had been in and out of hospital since she was born, after having a stroke and two seizures, but sadly passed away from a cardiac arrest in November 2019.
Her mum, Ashleigh Thompson, has now set up a charity in Jess’s name, which is donating gifts to frontline workers.
Jess and Leo’s Helping Hand, which was created with a friend who lost a 13-day-old baby, has been giving care packages with chocolate, tea, coffee and Easter eggs to nurses, police officers and teachers who are working during the coronavirus pandemic.
Mrs Thompson said giving birth to Jess was “the happiest moment of my life”, and she called her Teeny Weeny because she was so small for her age.
She said: “I remember looking down and seeing her big blue eyes open and look up, but she was so tiny, then I felt a huge yank like someone was pulling my insides out.
“The midwife looked like she was panicking and told me later that my umbilical cord was the smallest she’d ever seen, there wasn’t a lot of room to cut the cord.
“Jess was so beautiful and I never noticed anything was wrong. But they ran a genetic test and discovered she had the syndrome.
“I broke down.”
Her condition was diagnosed as Wolf Hirschhorn syndrome, and she was allowed home to see her family in Gateshead, Durham, where she lived with her mum and siblings Shannon, 17, Skye, 15, and McKenzie, nine.
Jess tragically passed away in November 2019 after a minor operation to help her digest food
In November 2019, doctors decided to perform a fundoplication operation on Jess, which would strengthen her stomach and allow food to settle – because she had been vomiting regularly.
Doctors at the Royal Victoria Infirmary in Newcastle said the operation went “perfectly”, but the two-year-old was rushed to an ICU the following day after her lips turned blue.
Mrs Thompson was told that Jess was suffering from internal bleeding, as she sat in the hospital waiting room with Jess’s dad, John Moore, 32.
I lay with Jess all night. I must have fallen asleep at one point and dreamt of her laughing and I woke up and she was just lying there cold.
She said: “I was just crying and begging them to save her.
“I couldn’t believe what was happening. It was only that day that she was holding her hands up for me to pick her up and cuddle.”
Minutes after emergency surgery to stop the bleeding, Jess went into cardiac arrest and died.
“The surgeon was crying when he told us the news. The nurses couldn’t believe it either. It was so sudden,” Mrs Thompson said.
She continued: “I had to ring my kids to tell them the news.
What is Wolf Hirschhorn syndrome?
Worlf Hirschhorn syndrome is a condition that delays growth and development.
The extremely rare disorder can bring seizures, and affected children often have problems eating and gaining weight.
As a result, many of those affected need to be fed through a tube at some point in their lives.
It also usually impacts the infant’s ability to sit, stand and walk.
Kids suffering from the condition often have distinctive facial features, with a high forehead and a flat nasal bridge.
The disorder results from a genetic change, but it not usually inherited from a parent.
“They arrived at hospital and were devastated. I don’t think they understood what was happening and that their sister was no longer alive.”
Mrs Thompson added: “I lay with Jess all night. I must have fallen asleep at one point and dreamt of her laughing and I woke up and she was just lying there cold.”
A week after Jess’s death, doctors told her mum that an unknown virus was found under the two-year-old’s skin which may have caused a life-threatening reaction from her body.
Jess was taking to her resting place in a princess carriage led by horses dressed as unicorns.
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Mrs Thompson has now set up a charity with a close friend, Ria Higgins, who lost her son Leo because of a heart condition when he was just 13 days old.
Jess and Leo’s Helping Hand sends care packages to families with children in hospital, and has recently started giving gifts to NHS nurses and other frontline workers who are helping the battle against Covid-19.
The latest figures from the Department of Health show 98,476 confirmed cases of coronavirus in the UK, and 12,868 people have died.
Mrs Thompson said the charity helps her grieve for Jess: “She went through so much in her short life and always came back stronger.
“At home she would pretend to be a little angel in front of me but would then pull her sister’s hair when I left the room and I would catch her and she would giggle.
“But she was so kind really. She had such a strong bond with McKenzie and they were always cuddling each other.”
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