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'Our lives changed forever after Ethan received his Diabetes diagnosis'

On Diabetes Awareness month, Co Derry mum Danielle Larkin opens up about her young son's battle with Type 1 Diabetes and how doctors missed the vital warning signs around the lifelong condition

A Bellaghy mum has opened up about the life changing moment her young son was disagnosed with Type 1 diabetes.

Danielle Larkin (33) once feared she would lose only child Ethan (8) after doctors told her to prepare for the worst after a serious seizure.

In an emotional interview with the County Derry Post, the young woman says she now wants to raise awareness of the lifelong condition and possibly save lives.

“There are so many misconceptions around diabetes and before Ethan was disagnosed, I was probably one of those people who held those misconceptions,” Danielle said.

“Now I know the importance of the signs and symptoms and if by sharing Ethan's story helps one person, well it is is worth it.”

Ethan was just three years-old and had just started nursery when he suddenly ill one day after his mum dropped him off.

“I'll never forget it,” recalled Danielle. “It was January 23, 2015 and I got a phonecall from Ethan's nursery teacher to say that he had taken some sort of turn.

“When I got there he was very lethargic, we were talking to him and it was like he was on another planet, he was just staring into space.

“The doctor's surgery is right beside the school so I brought him there – it was about 11am - and I explained to the receptionist what had happened. She told me to come back at 4pm that afternoon.

“But I just knew something wasn't right.

“So I left, I made my way down to the pharmacy, where my mother actually works, and I explained to the pharmacist how he was.

“The pharmacist got a blood sugar meter and pricked his finger.

“Right away she was shocked. The first blood sugar reading she got was 30 – that to me, and even my mother who worked there, was gobbedly gook.

“But the pharmacist said we needed to phone 999 now.

“I was oblivious to everything to do with diabetes at this point so the pharmacist had to explain to me what the reading was and what it meant.

Danielle was told how a normal blood sugar reading would be between 5 and 8.

“The pharmacist said, 'to get the seriousness of this through to you, this child could go into a diabetic coma or die, any minute now.'”

Ethan was rushed to Antrim Area Hospital where he was examined by a doctor.

However, the worried young mum was told that Ethan was just suffering from the effects of a viral infection.

“At that time I thought, well you know best, because you are the doctor,” said Danielle.

“But then, on the other side of things, I was thinking about what the pharmacist said, how high the blood sugar reading was and how the pharmacist was certain that he was a Type 1 diabetic.

“I said this again to the doctor but she was adamant he could go home.”

As the 33 year-old carried Ethan through the main doors of Antrim Area Hospital to leave, he took another seizure.

She recalled: “He was rushed back to the ward, the diabetic team was buzzed, he was hooked up to insulin, IV fluids, he had ketones – a serious and life threatening complication of diabetes.

“I just stood in the background and let the team - about 10 different people - work on him.

“The nurses and staff had to try to calm me down as I was giving off about what could have happened had he took a seizure sometime later and it being too late.

The doctor actually came back and apologised and said that sometimes they get it wrong but to me that wasn't acceptable.”
Fortunately three year-old Ethan began to respond to the insulin – making it clear that he was a diabetic.

He remained in hospital for a week where consultants and medical professionals began to prepare Danielle for the long road of caring for her son.

“I was given books, told I would have to go on courses, learn about carb counting, giving injections and different types of insulin,” she said.

“I remember Caroline Stewart, the diabetic consultant over everyone in the north, coming to see me and saying, 'Danielle, it will be like a jig saw to you now. After the shock and lack of sleep you'll start putting it all together.

“There was nothing major you missed, you'll look back and realise one day, oh that was a sign or this. It will make sense now but it wouldn't have then.'

“And she was right. Looking back I remember when Ethan had just started nursery, he'd come home and just sleep for ages.

“And we'd use to laugh and joke about it saying, 'oh it must have been a while hard day at nursery.

“But little did we know that sleeping a lot was a symptom of diabetes.

“There's also wetting the bed, which Ethan did do and which we put down to the change in starting nursery.

“He also had a really bad flu for a few weeks and it turns out that's another symptom.”

Diabetes is a lifelong condition that causes a person's blood sugar level to become too high.

There are two types – Type 1, where the body's immune sustem attacks and destroys the cells that produce insulin.

And Type 2, where the body does not produce enough insulin, or the body's cells do not react to insulin.

Approximately 400,000 people are living with the Type 1 condition in the UK, 29,000 of them are children, including Ethan.

Danielle had to go to courses on how to care for her son's condition.

“I am on my own with Ethan which makes it that little bit more difficult,” she said.

“I do personally feel a lot of pressure because if I slip up and do something wrong, it's on me.”

Danielle was forced to quit her job to care for Ethan and even became his classroom assistant for his first two years at St Mary's Primary School in Bellaghy.

Just as Danielle was getting used to the routine of injections, finger pricks and blood sugar readings, she was given a stark reminder of just how serious – and life threatening - her son's condition was.

May 2018 marked over three years since little Bellaghy lad Ethan Larkin (8) was diagnosed with Type 1 diabetes.

In that time his mum Danielle had been on what could only be described as an emotional rollercoaster. All whilst attempting to educate herself about a lifelong condition she, nor any of her family members, had ever experienced until her son's diagnosis.

No two days were the same, but each consisted of multiple finger pricks, blood sugar readings and injections, all to help keep the St Mary's PS pupil well and healthy.

Then one night, out of the blue, Ethan became very ill.

“It was a Sunday night. He had his supper, was tucked up in bed sound asleep and I went to check his blood sugars at around 12am, which were fine.

“I went to bed, set my alarm and at 2am I woke up, checked them again and all fine.

“Then at 5am I woke to this high pitched scream and I thought that he was having a nightmare.

“So I got up went into his room and the sight that met me will literally haunt me until the day I die.”

The little boy was having a full blown diabetic seizure so severe that his joints locked and his body completely contorted.

Shaking and stunned his mum reached for his blood sugar meter and discovered his sugars had dropped to one – dangerously low.

After using an emergency glucagon pen in an attempt to bring him around, Danielle dialled 999.

The schoolboy was rushed immediately to Antrim Area Hospital where a team of doctors were waiting on his arrival.

As he was being worked on by up to eight doctors and nurses Danielle, who was by his side, described how the machines that he was hooked up to, began to bleep.

“A nurse took me out of the room,” the emotional mum-of-one said.

“A doctor came out and said to me, 'Danielle, I think you need to start phoning people to come down because Ethan isn't responding to treatment'.

“His heart rate was really low and they could hardly get a pulse.

“The doctor also said that because he'd been seizuring for so long that the left side of his body wasn't working.”

Little Ethan was rushed for an emergency CT scan.

It was discovered quite quickly that no permanent damage had been caused and as Danielle's family rushed to the hospital, the little boy miracously started to recover.

Within two days, doctors said he was well enough to go home.

“He slept the entire time and thankfully can't remember any of it,” said Danielle.

"Which I am so thankful for because if he knew what he went through, he would probably be too scared to sleep. I know I was, for a long time."

The young mum was told that diabetic teams would need to keep a close eye on him.

“There were lots of phonecalls, lots of house visits and visits to the diabetic clinic,” she said.

“Then the team said there was this new piece of equipment out that they would like Ethan to try called a Freestyle Libre.”

The device is a glucose monitoring system attached to the arm which monitors a patient's blood sugar levels throughout the day, instead of constant finger pricks.

Danielle uses a separate scanner to check at what level Ethan's sugars are at and whether they are going up or down.

“We would be absolutely lost without it,” she said. “I still wake a few times a night and check on him, but compared to what it was like just after he had the seizure, I was a walking zombie.

“It's made both our lives just so much easier, as well as my family members or even the school, it's very good for them.”

Danielle said one of the toughest parts of being a mum to a diabetic child is when the condition affects them emotionally.

“Last year he went through a very bad stage where he was almost depressed.

“He was asking lots of questions about why he was different and he actually came out with the words, 'I would rather die than have this'.

“It was just heartbreaking as a parent to hear that and I didn't know how to respond to him saying something like that either.
“So I contacted his diabetic nurse Jacqueline McNeill – she is absolutely amazing.

“She said it was completely normal and actually it was great he was saying it – not so great for me having to hear it – but great that he was expressing himself.

“She said it was good that he could talk to me and that usually, they held it in until they were teenagers and then they start to rebel by drinking or smoking or not looking after themselves.

“So he was referred to a diabetic psychologist called Maeve Cushenan who he saw at the Mid last year. It helped massively.”

Just last week Ethan and his classmates at St Mary's came together to hold a special Diabetes Awareness day in the school.

They wore t-shirts with both students and staff talking about the condition.

Danielle said Ethan was proud to be able to educate others about those living with diabetes.

The young mum, who also praised her partner Sean for his help since coming into their lives two years ago, says that although there have been very tough days, there have been, and will be, many good ones.

"I love being a mammy , without a doubt it is my biggest achievement,” she said.

“I have to ignore the under eye bags the grey hairs and wrinkles that have developed rapidly since diagnosis.

“It's so tough and I've cried myself to sleep many nights, I have severe anxiety about the bad things that could happen Ethan and about his future, especially after hearing the tragic stories of others with diabetes but I must be strong for him.

“Not a day goes by that I don't wish I had diabetes instead of Ethan - I would trade places with him in a heartbeat and give him my pancreas if only it were possible.

“I am his substitute pancreas for now until he is old enough and educated enough to look after himself.

“In a way I also feel privileged to support my son with Type 1 and in so many ways having to deal with this together has given us a bond that I didnt realise could have ever been better or stronger that what it was before hand.”

For more information visit: www.diabetes.org.uk

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