Hi all, our lovely friends Rosanna and Brett received heartbreaking news about their beautiful daughter Delilah that no parent ever wants to hear. I have taken their words from the instagram page set up to raise awareness. @delilahslchjourney

“For those who may not know, on the 30th July 2024 our beautiful brave baby girl was diagnosed with Langerhans Cell Histiocytosis (LCH) at just 2 years old. Its an extremly rare type of cancer - about 1 in 200,000 children have this condition and there are about 50 new cases in the UK each year.

Delilah was admitted to Great North childrens hospital oncology ward and has been under the most exceptional care and team of specialists- we could not be more grateful. When the time is right we will share more about her journey and how her diagnosis came about but first we just want to come to grips with her journey ahead and spread awareness of LCH as it is something that we had never heard about before, and its completely shocked and rocked our workd.

Our darling Delilah is the strongest, most bravest little girl and although the journey ahead is going to be tough, she us our tough little cookie and we will be here with her fighting all the way, surrounded by so much love“

James is running the GNR on Sunday September 8th to raise donations for Delilah and for charities of her familys choice (Great North Childrens Hospital and HistioUK)

I know you will join us on sending this amazing family all of the love in the world whilst they navigate their way through this journey.

- Update from parents Rosanna and Brett, who have shared more about Delilah‘s journey so far to raise awareness.

“Delilah’s Story

On the 30th July 2024 our beautiful baby girl was diagnosed with Langerhans cell Histiocytosis affecting her skull and spine of which we know so far. However it took 3 different hospitals and 2 excruciatingly long weeks to reach her diagnosis due to the rarity of the disease.

We were first concerned about Delilah on the 17th July 2024 when a lump on her forehead had appeared. We initially assumed this was from her walking into the front door. However we checked her head at the time and there was only a red mark, and the impact was small when she hit the door she wasn’t running or jumping she just walked into the door briefly- so we really didn’t think it could be linked. However being concerned parents we took her to our local children’s accident and emergency to get her checked over.

They saw her straight away and said it’s most likely a heamatoma due to a direct impact to the head but referred us to a bigger hospital close by, so they could get a second option and also have the capability to scan the lump on her head- this appointment was scheduled for 2 days later on the 19th July 2024.

When we arrived at this hospital they again stated it’s most likely a haematoma as we could confirm she had a direct hit to the head, even though we were concerned the impact had not been hard enough to cause such a huge lump that didn’t show any signs of bruising. They did not scan or take any bloods which was what were had originally been referred for. They told us to come back in 4 weeks if there is no change to the lump on her head.

We waited few days but Delilah’s lump got even bigger and we were concerned this lump wasn’t just a heamatoma so we went back to the bigger hospital for advice. This time round they did scan Delilah’s head with an ultra sound and this showed a problem with her skull- it looked like a possible skull fracture. We were in shock how has her skull fractured? How is she not in any pain with it? We had a hundred questions racing through our minds. The consultants booked her in for a CT & further blood tests straight away and she was admitted to the children’s hospital and had the CT the following morning. The CT results showed that she had multiple lesions all over her skull and she needed further testing including an MRI and an ultrasound on her stomach. At this point in time we had no idea why and still assumed she had a skull fracture and even praying it was a skull fracture- something we can focus on and it will heal and our baby girl will be able to go home and be healthy - but we started to get the feeling something was very wrong.

We were then told that because there are lesions all over Delilah’s skull she needs to be admitted to specialists at the Great North Hospital Oncology ward, they are unable to diagnose Delilah as they are not specialists in this area but told us it could be anything from Granulomas, LCH or another oncology based disease but the oncology ward will help us with the next steps. They confirmed it was not a skull fracture and hitting her head in the door was a complete fluke (which we are now extremely thankful for)

As you can imagine our minds went straight to thinking the worst and googling EVERYTHING relating to skull lesions and a potential review of a stomach ultrasound and what was the link?

The next day we were seen be the amazing oncology consultants at GNCH and they explained what further testing Delilah would need ( baring in mind she’d already had cannulas in both hands, been sedated and had CT scans and full ultrasounds- all whilst be the most bravest girl in the world)

Delilah had full body CT, further blood tests, ultrasounds and a biopsy performed by a neurosurgeon . All of which confirmed Langerhans Cell Histiocytosis but it wasn’t just in her skull, it had impacted multiple vertebrae in her spine too.

We were told more about the disease and the basis of how it works. It’s a completely random mutation that occurred in Delilah’s blood and currently there’s no research that confirms what causes LCH, and they also confirmed it’s not a hereditary disease.

It works by generating too many immature Langerhans cells which lose their ability to fight infections, they clump together & create tumour lesions which begin to destroy healthy tissue - in Delilah’s case her bones but it can also affect organs and bone marrow.

The reassuring news is that this disease can be treated and isn’t always life threatening if it’s diagnosed quickly and treated quickly with steroid and chemotherapy.

Our Darling Delilah is having an operation on Friday 9th August 2024 to have a portacath fitted to her chest and to start her treatment plan.

It’s a very long road ahead but we are so proud of how brave, strong and resilient our baby girl has been throughout and we will be with her every step of the way.

We also want to share her journey to raise awareness and also as a reminder to follow your natural parental instincts to get checked out even if you are sent away, go back and ask for further testing because it might just save a life or give you an early diagnosis to start treatment.

We are so thankful for the amazing team at the GNCH and hope to raise funds to support their research and resources for those affected by LCH.

We love you so much Delilah lots of love Mummy & Daddy

Xxx”