Two-year-old Freya is her mum’s ‘little bestie’. She’s ‘super sassy’, loves cuddles and enjoys listening to stories at bedtime. She also hates water and screams the house down at bathtime, and even though Freya cannot speak, she lets you know very quickly if she doesn’t like something.
Freya’s story
Freya’s story
26th May 2026
‘When Freya was born she didn’t cry’
Freya’s story is being told as part of Acorns Children’s Hospice’s Spring Appeal – because behind her beautiful personality hides a traumatic beginning. When Freya was just three days old, she suddenly stopped breathing at home after suffering a severe bleed on the brain.
Freya was rushed to hospital for critical care and was put on life support – and she was not expected to survive.
“The pregnancy was pretty much perfect,” mum Sophie recalls. “All we’d wanted was a family and to have children, but there was always a little niggle in the back of my mind that something wasn’t quite right.”
Freya was born on the same day as dad Jack’s birthday and the congratulations from relatives and friends came flooding in.
Sophie said: “The birth went well, but when Freya was born she didn’t cry at all – she didn’t make a sound. She was very sleepy, and had jaundice, but everyone was telling me it was all normal and we were discharged home.”
‘We were told Freya was going to die’
The evening that Freya stopped breathing, Sophie had already called Triage ‘three or four times’ for advice. Just one hour after the final call, the newborn suffered a cardiac arrest and turned blue.
“We were in sheer panic,” Sophie said. “We called 999 and the emergency services instructed Jack how to do CPR while we were waiting for the ambulance.”
Freya was taken to intensive care. After a brain scan, doctors discovered she had suffered an intracranial haemorrhage and was referred for brain surgery.
Sophie said: “It was devastating; we didn’t know what had happened. At that point we were still getting messages of congratulations but were also being told that Freya was going to die. There’s no way of comprehending it all really.”
Then came the confirmation that Freya had suffered a rare congenital condition called a developmental venous anomaly (DVA), adversely affecting veins within the brain which had led to a blood clot. Further devastating issues were discovered and Freya was diagnosed with nonketotic hyperglycaemia (NKH) – a life-limiting condition that causes severe neurological symptoms.
With Acorns, you’re not alone
More than half of babies born with the condition die within the first week of birth. Few children with severe NKH survive past their fifth birthday.
Sophie’s and Jack’s lives were changed forever. Freya fought on, and at nine-months old the family were referred to Acorns Children’s Hospice. She continues to have seizures every single day.
Sophie, who herself works as a neurosurgery nurse, said: “Being told that your baby is going to have a lifelong disability, and that their time won’t be as long as it should be, it’s very isolating. It’s a really lonely place to be.
“When I went to the baby group at Acorns for the first time you realise you’re not actually alone. There are other parents who are in a similar situation, and it makes it that little bit easier knowing that you’ve got people to talk to, and that they know what you’re going through.
“The first time we came to Acorns it was just lovely. It’s an amazing atmosphere when you walk in; it’s just such a friendly place. Then you see all the staff interacting with the children, they were happy and it was so nice to see.”
Giving reassurance to parents
Freya receives multisensory therapy, palliative play sessions and assessment stays at Acorns.
Children’s Palliative Nurse Specialist Nic Miles is one of the highly trained team who helps care for Freya at Acorns for the Three Counties.
Nic said: “Being able to provide such a high standard of care is vitally important and enables parents like Sophie and Jack to have the confidence that we can manage complex symptoms, such as seizures.
“When coming to Acorns, children have a full assessment and care plan completed with symptom management at its core to ensure all their medical needs are met.”
She added: “For parents, it gives them reassurance that our nurses are highly skilled in managing difficult symptoms, so they can trust that their child is receiving the very best palliative care.
“It’s a privilege to be able to support families during their most difficult times.”
Sophie said: “When coming to Acorns, it’s like a big weight lifted off your shoulders, because obviously the nurses can do Freya’s feeds and prepare her medications, and while you still worry, it allows you to worry a little bit less.
“It lets us go to bed at a normal time, and you’re not constantly clock watching and symptom watching. It’s given me the opportunity to see what life is like as just a mum, rather than just as a medical mum. Jack is also a wonderful dad.”
Freya, who now has a baby brother called Rowan, continues to enjoy sensory play, water beds, twinkling lights, music and story times – and while she loves the family dog Margo, she doesn’t like her ‘kisses’.
Sophie said: “It’s so very scary and daunting getting told such life-changing news about your child, but even though it might not seem like it, there is joy to be had. Freya is so sweet and is the most special little girl who brings us so much happiness.
“They told us, as soon as we went into hospital, that Freya wasn’t going to survive. But then she survived one day, two days, three days, and now we’re nearly two years later. So children can be very resilient, and she teaches us so much.
“Freya loves it at Acorns, she enjoys all the sensory activities, and the nurses take her on little days out and she adores it there.”
Sophie added: “It will always be in the back of our minds of what will happen in the future, but Acorns has given us so much invaluable care and means that life is just that little less fraught.”
Acorns Children’s Hospice provides specialist palliative care for babies, children and young people with life-limiting and life-threatening conditions, and support for their families.
In the past year, the charity has cared for more than 800 children across the West Midlands, and supported over 1,100 families, including those who are bereaved. Children visit Acorns for rehabilitative respite, symptom management, emergency and end-of-life care.
This care and support is provided from Acorns three hospices, based in Birmingham, Walsall and Worcester, and in the community.
Acorns needs around £40,000 each day to provide its children’s hospice care, with more than 75% of that amount coming from generous donations and fundraising by the local community and income from its charity shops.
Help families like Freya’s to feel less alone. Donate to Acorns Spring Appeal today.