We are raising funds for much needed research into Childhood Desmoid Fibromatosis through the Azaylia Foundation. We never want any family to go through what we have.
Delilah-Rai was born on 30 December 2023, happy, healthy, and besotted by everybody.
She hit all of her milestones when she should and was incredibly clever.
On 30 January 2025, during bath time, I found a lump on the side of her nose.
I immediately Googled what it could be and made sure to book a GP appointment for the following morning. On 31 January 2025, Delilah was seen and was then admitted to our local PAU (Paediatric Assessment Unit) on the children’s ward due to suspicion of a non-accidental injury.
We were admitted for three days, and on the second night they finally carried out a CT scan, which showed a paranasal cystic lesion.
With this diagnosis, we were told it wouldn’t grow. Unfortunately, this was not the case. Delilah’s tumour was growing daily, gradually disfiguring her beautiful face.
Due to delays in Delilah’s case, she was left waiting long periods of time to be seen and to receive treatment. In May, we were finally seen at BCH, where she was referred for further testing.
In June, we attended CT and MRI scans and then a review appointment, where it was decided she needed a biopsy. She was again misdiagnosed, this time as having an odontogenic tumour. Delilah then had her biopsy on 16 July 2025.
We endured an anxious two-week wait before receiving her results on 30 July 2025: Desmoid Fibromatosis. At the time of diagnosis, we were told this tumour was benign, so we went home hopeful that our little girl was going to be fine. We were so very wrong.
The day after Delilah’s diagnosis, we met with surgeons to discuss removing the tumour, and a few days later her case was put forward for a tumour study. On 5 August 2025, we were told that Desmoid Fibromatosis is considered cancer and that the oncology department wanted to see her urgently.
We attended an oncology appointment on 7 August 2025, where Delilah-Rai was admitted to have her Hickman line fitted and chemotherapy started as soon as possible. Unfortunately, Delilah never went home.
On Saturday 9 August, Delilah deteriorated rapidly overnight and was placed on life support in PICU. At 10pm on 9 August, we were told that there were no remaining options apart from palliative care.
The decision was made to move her to a children’s hospice and withdraw life support. Delilah passed peacefully, wrapped in my arms, surrounded by family who loved her, sitting in the beautiful garden, on 10 August 2025 at 16:12.
Delilah showed no symptoms of cancer apart from the lump we found in January.
However, due to how rare Desmoid Fibromatosis is—especially in the location of Delilah’s tumour—it was repeatedly misdiagnosed. She also waited far too long for a biopsy, which inevitably meant her cancer was left untreated for too long to be cured.
It was only 11 days between her correct diagnosis of Desmoid Fibromatosis and her passing. As her mum, I am beyond devastated, heartbroken, and longing for my daughter back.
Anybody who was lucky enough to know our Delilah would know what a beautiful, kind, cheeky, and loving little girl she was—and a super fan of Hey Duggee.
Throughout her journey, she was strong and brave. She never let her illness get her down and remained the happiest little girl—determined and cheeky always.
Delilah’s story has made me incredibly passionate about helping in any way I possibly can through research, fundraising, and creating a lasting legacy for her.
We are raising funds to go towards much-needed research into childhood Desmoid Fibromatosis. As it is deemed a rare cancer type, there is very little research in the UK. However, we are working with the Azaylia Foundation, who have identified a programme we are wanting to support at the University of Birmingham with the help of donations.
I chose the Azaylia Foundation because I followed Safiyya and Ashley’s little girl’s story very closely—heartbroken for them—and never in a million years thought I would be in the same place just a few years later.
I chose them because, as parents who have lost a child, I can relate to their pain and their motivation to make change, as well as their incredible work funding research at universities.
Azaylia Foundation has granted over £1.2million in research funding in Childhood Cancer at four Universities in the last 4 years, supporting multi year PHD Research in early diagnostics and treatment research for a range of. We are pleased to be supporting Delilah-Rai's family to help support leading research into Desmoid Fibromatosis and for the family to help shape much needed research. We are supporting Delilah under the Azaylia Friends initiative giving families a voice and helping them create impacts in the research world for Childhood Cancers
