'Pale as a ghost': Girl diagnosed with rare condition after symptoms put down to constipation
A little girl was diagnosed with rare bone marrow failure after medics put her symptoms down to constipation and mum's "anxiety" as a first-time parent.
Amy Dixon, 32, gave birth to Freya, now four, in December 2020, and "instantly knew" something wasn't right.
She was "constantly" crying or "lethargic" and at four weeks old, Amy noticed she looked "pale as a ghost".
Taking her to the GP multiple times a week, medics put her symptoms down to constipation and Amy's "first-time mum anxiety", she claims.
On 11 March 2021, Freya fell unconscious and was rushed into Airedale Hospital, Steeton, where medics described her as "the palest baby they'd ever seen".
Medics took one attempt to successfully resuscitate Freya, and she was rushed to Leeds Children's Hospital and placed in the Paediatric Intensive Care Unit (PICU) before being transferred to ICU.
In October 2021, at 10 months old, Freya was diagnosed with Diamond-Blackfan Anaemia Syndrome (DBAS) - a rare condition that causes the bone marrow to produce too few red blood cells.
Freya has since undergone two steroid trials - to encourage the body to produce more red blood cells - and has blood transfusions every three weeks at Leeds Children's Hospital, to replace her red blood count, which she still has now.
Freya's only chance of long-term survival is to undergo a bone marrow transplant, and after waiting over a year, doctors finally found a match.
She went to Leeds Children's Hospital on September 8 to prepare for her transplant.
Amy, a full-time mum of one from Bradford, said: "As soon as Freya was born, I knew something wasn't quite right with her health.
"Medics telling me it was first-time mum anxiety was so frustrating.
"I felt my concerns were being brushed off.
"Seeing her get more ill left me feeling helpless.
"When we finally received her diagnosis, I felt a little relief.
"I'm feeling anxious about her bone marrow transplant- it's a long time in hospital for the preparation, procedure and aftercare - but we're thankful.
"Freya is the bravest little girl and so full of light. Her little smile is like magic.
"She inspires me every day."
After a seemingly normal pregnancy, in December 2020, Amy and her former husband, James Dixon, 32, welcomed their first child, Freya, whom they have joint custody of.
They "instantly" noticed Freya's constant crying, which contrasted with her being lethargic.
At six weeks, Freya's complexion began turning paler, triggering Amy to take her to the GP, where her symptoms were put down to constipation.
However, on 11 March 2021, Freya fell unconscious and was rushed to Airedale Hospital, Steeton.
"Within the panic, I also felt anger towards the previous medics who had shrugged off my pleas for help." Amy said.
Medics found that Freya's haemoglobin level - a measurement of protein in red blood cells - was 13, despite a normal level being above 120.
She was then transferred to Leeds Children's Hospital and spent a week in the Paediatric Intensive Care Unit (PICU) before being transferred to the ICU for another week.
In October 2021, at 10 months old, Freya was diagnosed with Diamond-Blackfan Anaemia Syndrome (DBAS).
According to the National Library of Medicine, DBAS affects approximately 5 to 7 per million newborn babies worldwide.
In December 2021 and September 2024, Freya underwent two steroid trials - to encourage the body to produce more red blood cells - which were unsuccessful.
She then had blood transfusions every three weeks at Leeds Children's Hospital - to provide red blood cells to the body - which she still has now.
In April 2025, after over a year of waiting, Freya found a bone marrow donor and is now preparing to go to Leeds Children's Hospital to prepare for her transplant on 18 September.
She will remain in hospital for a further eight weeks and will undergo one round of chemotherapy and one round of immunotherapy to create space within her existing bone marrow.
Freya will have DBAS for life, but the transplant means she doesn't need further transfusions.
Speaking now, Amy said: "It's going to be a very invasive treatment and then a long road to recovery, but we're so thankful.
"This treatment will be life-saving for my little girl.
"I'm so thankful for Leeds Children's Hospital, they've been amazing - not just for Freya but also for me.
"I feel like I've been fighting for Freya since the moment she was born, and I'll never stop."
Amy is fundraising to take Freya to Disneyland Paris when she is fully recovered from her bone marrow transplant.
"Freya loves Disney princesses - especially Elsa." Amy said.
"She's also a total thrill seeker and loves nothing more than the big roller coasters.
"I've seen her battle so many challenges; to see her little face light up when she meets Elsa will be amazing."
To donate, visit www.justgiving.com/crowdfunding/freyabmt