WHEN mum Tara Lyons and dad Daniel O'Sullivan put their 15-month-old daughter to bed- they never imagined it would be the last time they tucked her in.
Little Sofia Lyons-O'Sullivan had been 'happy and healthy', but had been suffering with the sniffles in April 2020.
Her parents just thought she was teething, but the next morning, they struggled to get her to eat her toast.
Without warning, the child's head dropped forward and her horrified parents realised she couldn't open her eyes.
The couple rushed their little girl from their home in Borehamwood, Hertfordshire, to hospital.
Just hours later, Sophia sadly fell unconscious and never woke again.
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Sophia died of a rare brain condition called Arteriovenous Malformation (AVM) – an abnormal connection between the arteries to the veins which disrupts the normal circulation of blood.
Now Sophia's parents are sharing their story as they try and raise awareness of the illness.
Tara, 37, said she felt she wanted to create something in her daughter's memory and has made a charity Christmas anthology titled 'Written in the Stars'.
The mum said: "Sofia went to bed a happy and healthy baby on the Monday night and by the Tuesday afternoon, she was unconscious.
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"I never got to see her beautiful blue eyes again.
"I walked in to the hospital with my one and a half year old, and left with a box of memories."
Tara only got to share one birthday with her little girl.
She added: "I was heartbroken. I knew then that I wanted to do something good in her memory.
"Seeing the anthology now, that I have created and put together myself, is so special."
The mum said that while she had gestational diabetes through her pregnancy with Sophia, there were never any other issues.
She described Sophia as a 'lovely happy baby' and that in the year and a half of her life, she had met all her milestones and said her 'weight was fine'.
Even though some people don't think they have personalities at that age, she really did – she was so funny and cheeky and sassy
"She was crawling, walking and saying a few words and had never been to hospital," she added.
Most of the time, the little girl would be 'making mischief' with her brother Leo, 7.
Tara added: "She was so beautiful and gentle and she always had her wispy hair pulled into a little 'Bam Bam' ponytail.
"Even though some people don't think they have personalities at that age, she really did – she was so funny and cheeky and sassy.
"She was the biggest Moana fan, she would sit and watch the whole film and screw up her face at the bad character or smile with the good characters.
"If she ever spotted Leo with the Milky Ways, she would be right after him for them.
"Whenever I watch a video of Sofia, she is always laughing at something Leo is doing."
Despite the UK going into lockdown in March 2020, Tara said life had seemed 'almost perfect' for the family.
What is Arteriovenous Malformation?
An arteriovenous malformation is a tangle of abnormal and poorly formed blood vessels.
The vessels have a higher rate of bleeding than normal and can occur anywhere in the body.
Brain AVMs are of special concern because of the damage they cause when they bleed.
If a bleed occurs in the brain it can cause a stroke which can be potentially life-threatening.
They are very rare and occur in less than one per cent of the general population.
It is not known why AVMs occur.
Brain AVMs are usually congenital, meaning someone is born with one, but they’re usually not hereditary.
People probably don’t inherit an AVM from their parents, and they probably won’t pass one on to their children.
They are thought to be caused when blood vessels form abnormally in the womb.
Symptoms may vary depending on where the AVM is located:
- More than 50 percent of patients with an AVM have an intracranial bleed
- Among AVM patients, 20 percent to 25 percent have focal or generalized seizures
- Patients may have localised pain in the head due to increased blood flow around an AVM
- Fifteen percent may have difficulty with movement, speech and vision
The chance of a brain AVM bleeding is one per cent to three per cent per year.
Over 15 years, the total chance of an AVM bleeding into the brain – causing brain damage and stroke – is 25 percent.
Treatment depends on the type of AVM and where it is located.
A team of specialists will be assigned to a patient to find the best possible treatment options.
Common treatments include embolisation, to cut off the blood flow to the vessels, and surgery to remove it.
Source: The Stroke Association
They had just moved to a bigger house so had more space and more time together as a family.
Little Sophia had her own room which had been painted with grey mountains on the walls.
But on April 7, their lives changed.
Tara explained: "On the 6th, Sofia had been fine but she had a little bit of a stuffy nose, so we thought maybe she was teething.
"She slept really well and in the morning she seemed fine but when Daniel came to take her for her breakfast, she didn't want her toast.
"When he handed her to me, her head just dropped forward and she had no strength and her eyes weren't opening."
The doctor said she needed antibiotics and Tara looked at her daughter, and said she thought she had seen her last breath.
"I started screaming," she said.
Transferred to Great Ormond Street Hospital in London, Sofia underwent a number of tests to understand what had happened.
Tara said: "They kept asking me if she had ever had any seizures or any speech issues or eye issues but she had nothing – they were so shocked."
After a day in hospital it was revealed that Sophia had suffered an AVM.
Tara said that 'everything was a blur' and that medics kept warning her that her daughter was really unwell.
Sophia didn't seem to be in any pain and didn't have any seizures – meaning there really hadn't been much sign that her condition was deteriorating.
"When they gave her the CT scan, they had to shave some of her hair off and I thought, that's her first haircut," Tara added.
All I could hear as I held Sofia was Frozen's Let it Go in the background and I'm not sure what it was, but I looked at Dan and we knew it was time. It broke my heart
After further tests and an attempt to relieve the pressure on Sophia's brain, it was confirmed that she wouldn't survive.
There had been too much damage to the organ and Sophia had both a bleed on the brain and an aneurysm.
Tara added: "I felt nauseous and sick. My head was swimming with information.
"There was so much information to digest, let alone the fact you've just been told your daughter is not coming out of this alive.
"I didn't want to leave the room because I knew once we did, we would have to face the truth."
Six days after she was rushed to hospital, Sophia's life-support machine was turned off.
"They brought us in the room with a couch and they gave us a box of things, so we would make clay footprints and handprints and take pictures," Tara said.
"Then we sat down and that was the signal for us to hug Sofia and when we were ready, it would be time.
"All I could hear as I held Sofia was Frozen's Let it Go in the background and I'm not sure what it was, but I looked at Dan and we knew it was time. It broke my heart."
The couple then had to explain to seven-year-old Leo that he would never see his little sister again.
Tara added: "It was like the world closed down for Sofia and we didn't have to worry about other people – we just did what we needed to do and had time to be alone or cuddle together and grieve."
The mum said she knew she wanted to do something for her little girl , so spoke to Bloodhound Books, where she works as a publisher.
Tara requested authors to share short stories and was overwhelmed by the response.
"We had nearly 100 submissions, I was overwhelmed," she said.
"When I told Daniel how many people had sent things in, he was really moved."
The authors of the 23 stories include crime fiction writers Angela Marsons and Joy Ellis and novelist Louise Beech, and there is a touching foreword by Tara, introducing the book in Sofia's memory.
The book is set to be released ahead of Christmas and the money made will go to The Butterfly AVM Charity and Great Ormond Street Charity.
Tara said that creating the book pulled her out of a dark spot and also created something in Sofia's memory.
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"Brain AVMs are not widely known at all and if I can help raise awareness as well as money for two amazing charities, that would mean the world.
"I just want Sofia to be remembered as my Moana-loving, beautiful girl," she added.
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