I have created this go fund me on behalf of Delilah’s beautiful mum, Kayleigh.

Sadly, Delilah-Rai passed away at just 19 months old. Far too soon. This go fund me has been set up to raise awareness of Delilah’s story and to support Kayleigh and her family as they navigate the future.

Delilah’s backstory:

On the 30th January 2025, after having a bath, a pea sized lump was found. It was very hard to see, but could be easily felt. After finding this, her mum booked her into a doctors appointment the following day. Delilah was then referred to her local children’s ward where they spent 3 days, not trying to help Delilah, but trying to prove that this lump was a non-accidental injury. Delilah was then sedated to have a CT scan done.

While in the hospital, they were told that it was a paranasal cystic lesion and that the ENT department would monitor her going forward. They were told that the lump would not continue to grow. The same doctor who told them the lump would not grow, told them he was making a referral to ENT and they would be contacted within a week.

2 weeks later, Delilah and her family were still waiting to hear from the ENT at the hospital she had been referred to. Delilah’s mum too Delilah back to the GP as the lump was in fact continuing to grow. The GP contacted the ENT at the new hospital and was told that Delilah had in fact not been referred to them. Delilah and her family were waiting 2 weeks for a phone call that was never going to happen.

The GP contacted Delilah’s mum the following day to inform her that, although Delilah hadn’t been referred to the ENT like they had initially been told, they would now like to make a new referral. This referral was going to go to a completely different hospital. The earliest appointment that was available for Delilah was in April, and Kayleigh immediately took it.

On April 2nd, Delilah was seen by the ENT, who took medical photographs and referred her to ANOTHER hospital.

On April 17th, Kayleigh phoned the new hospital to see how long an appointment was going to take as Delilah’s lump had continued to grow every single day. To the whole families surprise, Kayleigh was told that an appointment would take at least 3 months due to Delilah being graded as medium urgency by the consultant. They were told that, if the lump continued to grow over the next 2 weeks, they were to contact the hospital again.

Two weeks later, Kayleigh contacted the hospital again as Delilah’s lump had continued to grow rapidly. She then sent an email containing 10-15 photos of the rapid growth over the last 2 weeks alone, Delilah was given an appointment for 2 days time.

On May 8th, Delilah had an appointment with another consultant who ordered CT and MRI scans while under general anaesthetic. These were ordered as urgent. May 9th, she was admitted for her scans.

On the 18th June, Delilah and her family went into the hospital for an appointment to review the scans. They met with a surgeon team who would be performing an operation to remove Delilah’s lump. However, the surgeon was extremely concerned about the rate at which the lump was now growing, so advised that a biopsy needed to be performed. The biopsy was booked for July 16th.

On the 23rd June, Delilah’s eating took a decline. An appointment was booked with the GP for June 27th. The GP didn’t know what to do as Delilah was now classed as a “Medically complex child”. This means that the GP don’t know how to treat her anymore. The family were advised to take Delilah to Birmingham children’s hospital the following morning.

The following day, Delilah was taken to The Children’s Hospital where she was prescribed Fortini milkshakes, a high calorie alternative. Due to Delilah’s eating deteriorating, they were going to bring her biopsy forward and try to debulk her lump at the same time. Unfortunately, no one would work on Delilah on their own. Kayleigh was told that, as long as Delilah had 2 shakes a day, she would maintain weight due to the high calorie intake.

On the 18th June, Delilah weighed 9.4kg. On the 11th July, Delilah weighed 8.85kg. And on the morning of her biopsy (July 16th), Delilah weighed 8.85kg. Delilah was taken into theatre at 9:30am, and at 12:15 the surgeon came to update Kayleigh. Unfortunately, they were unable to debulk the lump as they did not have a visual on Delilah’s eye.

During her biopsy, Delilah required adrenaline and morphine. A central line was stitched into her groin and she had 2 cannulas placed, 1 in her ankle and 1 in her wrist. Delilah was then admitted overnight so that she could have an appointment with Ampothology the following morning.

Delilahs biopsy was sent off in 2 parts. One was a quick result and the 2nd part would take around 2 weeks to come back. However, Delilah’s surgeon made the decision after 24 hours to send her biopsy off for a 2nd opinion.

On July 17th, Delilah was revived by general paediatricians and a dietitian prescribed different calorie alternatives. The general paediatrician wanted a speech and language review to ensure that Delilah’s swallow was safe. Ompalmology were unable to see Delilah as planned and wanted Delilah to stay as an impatient until an appointment became available.

Kayleigh pushed for discharge as Delilah was not coping in a hospital environment. They were then waiting for an ompalmolgy call to book in an assessment for her eye and the SALT team to assess her in the community.

On the 30th July they were given Delilah’s official diagnosis. Delilah’s official diagnosis was Desmoid Fibromatosis. This is an incredibly rare tumour which is benign, however extremely aggressive. Although it is not cancer, it behaves in the same way that cancer does. This type of tumour is 1 in 100,000 and requires surgical removal and chemotherapy. There is a high reoccurring rate for this tumour and Delilah will have needed to have constant monitoring throughout her childhood and scans to ensure that if it was to reoccur it would be caught early. Due to how aggressive this tumour is, Delilah will have needed facial reconstruction as the tumour had “eaten” her cheek bone and potentially her eyes orbit floor. She was going to require a titanium plate which would have needed to be replaced for bigger ones as Delilah grew. Her surgery was going to take a minimum of 6 hours and could potentially take all day.

A treatment plan was put in place for Delilah. She was going to have surgery on August 7th. There was, however, a risk that the oncologist could postpone the surgery and try chemotherapy beforehand. During her surgery, they were due to remove the tumour and all of the damaged bone and tissue surrounding. At that time, they were going to be removing her upper left jaw, left nasal bones, left cheekbones and her orbit floor in her left eye. The tumour had destroyed the left side of her face. At this time, Delilah was not going to have facial reconstruction.

On august 5th, Delilah’s surgery was cancelled. Oncology did not give the go ahead and wanted to use medical intervention (chemotherapy) first. Delilah’s family, and both surgeons did not agree with this decision and they were fighting for the surgery to take place. On this day, they were also told that Delilah’s condition was infact soft tissue cancer.

August 7th, Delilah and her family met with her oncologist, her maxillo facial surgeons and her cancer support nurse and it was agreed by all that chemotherapy was to be the first step of treatment. Due to the size of the tumour and how aggressive it was, surgery was going to be too risky at this stage. She was to be monitored very closely and surgery was able to be brought forward at any time.

Unfortunately, this is when Delilah’s family were told that the odds of Delilah beating this were very low and any treatment going forward may only be prolonging and not curing. She was admitted into hospital and her Hickman line was inserted ready to start chemotherapy. She was due to have 2 types of chemotherapy a week.

On August 8th, Delilah had her first round of chemotherapy. Sadly, Delilah’s condition deteriorated rapidly. On August 10th Delilah gained her wings. Leaving behind 4 siblings and a family who will never be the same again.

Thank you for spending the time to read over Delilah’s story. Heartbroken beyond words that Delilah’s journey ended so suddenly and far too soon. At just 19 months old, she was a brave little fighter who faced every day with a smile, a wiggle, and a dance in her step. Her story did not have to end this way, the world feels dimmer without her light.

All the support Kayleigh has received so far has been amazing and means more than you could ever imagine, every donation, every kind word, and every shared memory helps Kayleigh and her family navigate this unimaginable loss. From the bottom of our hearts, thank you.