Heartbroken mum who thought her toddler had ‘the sniffles’ before she suddenly died of a rare brain condition creates a charity book in her memory

·10-min read

A grieving mum whose ‘happy and healthy’ toddler went to bed one night ‘with the sniffles’ and suddenly fell unconscious early the next day before dying of a rare brain condition has inspired authors around the world to create a charity anthology in her daughter’s memory.

When Tara Lyons, 37, and Daniel O’Sullivan, 34, put their beautiful 15-month-old, Sofia Lyons-O’Sullivan, to bed with the sniffles in April 2020, they thought she was just teething – and didn’t imagine for one moment that this would be the last time they ever tucked her in.

But at breakfast time next morning, as they tried to coax her to eat some toast, the tot’s head dropped forward without warning – and her horrified parents realised she couldn’t open her eyes.

Sofia enjoying a snack in her high chair (Collect/PA Real Life)
Sofia enjoying a snack in her high chair (Collect/PA Real Life)

Distraught, Tara, who is a production editor for a publisher, and Daniel, a warehouse manager, rushed Sofia from their home in Borehamwood, Hertfordshire, to hospital, where just hours later she fell unconscious – and devastatingly, never woke again.

Despite never showing any symptoms, Sofia had suffered from a rare and unsuspected brain condition called Arteriovenous Malformation (AVM) – an abnormal connection between the arteries to the veins which disrupts the normal circulation of blood.

Approaching what would have been Sofia’s third birthday last December,  Tara felt an overwhelming urge to create something in her memory and resolved to create a charity Christmas anthology, filled with young-adult mixed fiction short stories, penned by a host of renowned authors to raise awareness of the cruel condition.

The family at Christmas in 2019 (Collect/PA Real Life)
The family at Christmas in 2019 (Collect/PA Real Life)

Titled ‘Written in the Stars’ and due to be published by Bloodhound Books next month, Tara, who also shares a son Leo, nine, with her partner, said: “Sofia went to bed a happy and healthy baby on the Monday night and by the Tuesday afternoon, she was unconscious.

“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.”

Sofia looking cute in her Christmas clothes (Collect/PA Real Life)
Sofia looking cute in her Christmas clothes (Collect/PA Real Life)

Speaking about the moment she decided to create something in her daughter’s memory, Tara said: “I remember going to pick up balloons my friend had made for Sofia which said ‘Happy 3rd Birthday’, to place at her graveside, and it took my breath away.

“I only had one birthday with her – I couldn’t understand how it was her third.

“I was heartbroken. I knew then that I wanted to do something good in her memory.”

Sofia playing with a toy (Collect/PA Real Life)
Sofia playing with a toy (Collect/PA Real Life)

She added: “Seeing the anthology now, that I have created and put together myself, is so special.

“The cover of the book has a little girl reaching for the stars and it looks like Sofia, in such a gentle and sweet way that was just like her.”

Despite Tara suffering with some gestational diabetes through her pregnancy, from the moment Sofia was born, there were never any problems.

Leo and Sofia’s first ever picture in hospital after she was born (Collect/PA Real Life)
Leo and Sofia’s first ever picture in hospital after she was born (Collect/PA Real Life)

“She was such a lovely and happy baby,” Tara said.

“Over the year and a half of her life, she met all her milestones and her weight was fine.

“She was crawling, walking and saying a few words and had never been to hospital.”

Tara and baby Sofia having a cuddle (Collect/PA Real Life)
Tara and baby Sofia having a cuddle (Collect/PA Real Life)

Sofia was usually busy making those around her smile or making mischief with her older brother, Leo.

Tara said: “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.”

Sofia reading her favourite book Moana (Collect/PA Real Life)
Sofia reading her favourite book Moana (Collect/PA Real Life)

She added: “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.”

Leo and Sofia playing outside (Collect/PA Real Life)
Leo and Sofia playing outside (Collect/PA Real Life)

While the world went into lockdown in March 2020, life had seemed almost perfect for the family.

Tara said: “We were actually loving the first few weeks of lockdown because we had just moved from a two-bed flat to our new three-bed house with a garden and we had all this space and time together as a family.

“Sofia had her own room, with grey mountains painted on the walls and lots of pink and leopard print blankets and cushions, and lots of books – just as it still looks now.”

Daniel holding Sofia at the hospital (Collect/PA Real Life)
Daniel holding Sofia at the hospital (Collect/PA Real Life)

But on April 7, 2020, the family’s lives changed forever.

Tara said: “The day before, 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.”

The family enjoying a day at the beach in 2019 (Collect/PA Real Life)
The family enjoying a day at the beach in 2019 (Collect/PA Real Life)

She added: “When he handed her to me, her head just dropped forward and she had no strength and her eyes weren’t opening.”

Tara and Daniel called an ambulance and Sofia was taken to hospital.

She said: “Sofia was sat on my lap and the doctor came in and said that they need to give her some antibiotics.

“But then I looked at her and it was like I saw her take her last breath. I started screaming.”

Tara and Sofia at Christmas in 2019 (Collect/PA Real Life)
Tara and Sofia at Christmas in 2019 (Collect/PA Real Life)

Rushed off to intensive care, doctors worked hard to stabilise the tot’s condition, but she was still unconscious.

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.”

The whole family two weeks after Sofia was born on December 3, 2018 (Collect/PA Real Life)
The whole family two weeks after Sofia was born on December 3, 2018 (Collect/PA Real Life)

After a day in hospital, Sofia went in for a CT scan which revealed she had suffered a brain AVM -an abnormal connection between the arteries and veins which disrupts the normal circulation of blood – on the stem of her brain.

“Everything was a blur, they kept saying to me that she was really not well but I just kept thinking she would be okay,” she said.

“We were a normal family of four stuck in lockdown and then two days later my daughter is lying on a bed in life support.”

Sofia with her big brother Leo (Collect/PA Real Life)
Sofia with her big brother Leo (Collect/PA Real Life)

She added: “You never want your child to have seizures or be in pain, but if she had, there would have at least been a sign.

“When they gave her the CT scan, they had to shave some of her hair off and I thought, that’s her first haircut.”

After further tests and an attempt to relieve the pressure on Sofia’s brain, the doctors confirmed the worst – that there was no hope of survival.

Sofia having fun in the sea (Collect/PA Real Life)
Sofia having fun in the sea (Collect/PA Real Life)

She said: “There was too much damage on Sofia’s brain, she had a bleed on the brain and an aneurysm.

“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.”

Tara with Leo and Sofia at a Christmas party in 2019 (Collect/PA Real Life)
Tara with Leo and Sofia at a Christmas party in 2019 (Collect/PA Real Life)

Tara added: “I didn’t want to leave the room because I knew once we did, we would have to face the truth.”

On Easter Sunday, six days after Sofia was first brought in to hospital, her life support was tragically 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.

Daniel and Sofia having a cuddle (Collect/PA Real Life)
Daniel and Sofia having a cuddle (Collect/PA Real Life)

“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.”

Coming back home that day without Sofia, Tara and Daniel had to explain to her brother, then seven, that his little sister wasn’t coming home.

Leo and Sofia in matching pjs (Collect/PA Real Life)
Leo and Sofia in matching pjs (Collect/PA Real Life)

“We all just stood in the kitchen and hugged and cried together,” she said.

In many ways, the lockdown acted as a blessing for the family, giving them time to privately grieve.

She said: “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.”

Tara and Sofia on her first birthday (Collect/PA Real Life)
Tara and Sofia on her first birthday (Collect/PA Real Life)

Approaching what would have been Sofia’s third birthday, Tara felt overwhelmed with emotion.

Tara said: “Sofia’s birthday is December 13, the day after Leo’s on the 12th, so it is always really hard to celebrate one day, knowing the next, she is not there to celebrate with.

“I wanted to get a Happy Birthday balloon for her and when I went to pick it up, it took my breath away.”

The family for Sofia’s Christening (Collect/PA Real Life)
The family for Sofia’s Christening (Collect/PA Real Life)

She added: “I only had one birthday with her, how can it be her third?

“I knew I wanted to do something, so I spoke to Bloodhound Books, where I work, and said I wanted to do something in her memory that is good.”

Coming up with the idea of charity anthology for Christmas – the same month as Sofia’s birthday – Tara requested authors to share short stories and was overwhelmed by the response.

The book cover (Handout/PA Real Life)
The book cover (Handout/PA Real Life)

“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.

Sofia the reindeer in 2019 (Collect/PA Real Life)
Sofia the reindeer in 2019 (Collect/PA Real Life)

Now due for early release next month, ahead of Christmas, Tara hopes they can help spread awareness of brain AVMs and raise money for The Butterfly AVM Charity and Great Ormond Street Charity.

Tara said: “Creating this anthology pulled me out of a really dark spot, and it means so much to know there will always be something out there in Sofia’s memory.

“And if it helps someone who has gone through what we have gone through, then that is amazing too.”

Tara and Sofia at her Christening in 2019 (Collect/PA Real Life)
Tara and Sofia at her Christening in 2019 (Collect/PA Real Life)

She added: “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.”

You can donate to Tara’s fundraiser in memory of Sofia here – https://www.gofundme.com/written-in-the-stars-in-memory-of-sofia

To pre-order Written in the Stars, go to: https://www.amazon.co.uk/Written-Stars-Anthology-Betsy-Reavley-ebook/dp/B0BFKNNVYF/