Darcy's Story

Darcy is a twin, she was first known as ‘twin 1’ and made a very fast entrance into the world at 33 weeks followed 2minutes later by ‘twin 2’ her brother, Teddy.

Their NICU stay was emotionally difficult but overall rather uneventful and they were discharged after a 4 week stay.

Darcy at 6 weeks stopped breathing at home and was resuscitated at home by myself performing rescue breaths then chest compressions. Thankfully she started breathing, following a rather scary few days of investigations at our local hospital it was put down to bronchiolitis.

The next few years were health wise uneventful & the twins turned 4 in August ‘23 they then started school September 2023.

Darcy started becoming ill with what we thought were just bugs/viruses although no one else in the house became affected.

At the end of December Darcy suffered with a terrible crick neck, we assumed she slept funny and treated it at home. Then a couple of weeks later she had another crick neck, I was concerned and took her straight to minor injuries, the Dr didn’t feel the need to see her and they let a nurse check her over, she stated to persevere with home care again.

It carried on longer than her first crick neck, and the school called me in to collect Darcy as she was in so much pain, so I called our GP hoping for a drs assessment. They refused & had the receptionist call me back and state she did not need to be seen because minor injuries had reviewed her.

Feeling upset I then started looking into getting private insurance and an appointment privately as I felt something was wrong.

Then her symptoms like magic disappeared.
Another week later Darcy started limping, I suffer with sciatica and her symptoms were very similar, she was worse in the morning and evening but throughout the day she seemed ok. The school started issuing Calpol if she seemed in pain and she was becoming worse throughout the week.
Thursday 1st February the school called me to say Darcy was in pain so I put a form into our local GP stating Darcy needed to be seen by a Dr and they gave us an appointment. I whizzed out of work collected Darcy and took her to see the GP. The dr became immediately defensive asking what I was there for, the neck or the limping? I explained Darcy had had two cases of crick necks and now was on and off limping. I thought they were connected and needing investigating.

The dr had a very blasé attitude and compared Darcy to her daughter stating she hadn’t long started school and she was bound to be tired. She had an air about her that I was being out of line by requesting Darcy was seen by a dr and was told to monitor her and come back if it continued.
We left feeling very deflated. Darcy limped back into school and my mum collected her at 3pm. I was sat on reception at work when my mum called to say Darcy was in so much pain, I cried feeling so deflated about what had happened at the drs just a few hours earlier and at a complete loss as to what to do.

My husband researched private drs and we devised a plan to go to a different minor injuries the Sunday morning show them the video, then worse case we would go to a private GP for tests.

The Tuesday I collected Darcy from school and the teacher said Darcy had been limping again, she couldn’t even walk to our car. I called the GP and demanded to be seen. We saw another GP who could not see anything wrong but found the video very concerning and called the paediatric ward at our local hospital.

We were booked in for 10am the next morning Wednesday 7th February for tests/X-rays etc.
It was a long day, I felt like I was wasting their time. The X-rays were clear.
The bloods were not.
We were taken to a side room around 4pm where play workers played with Darcy and our greatest fears were confirmed, Darcy’s bloods showed she had leukaemia.
She needed a blood transfusion straight away and was going straight to Bristol to start chemotherapy. Our world in a matter of minutes was turned upside down.

We found out the next day Darcy has Acute Lymphoblastic leukaemia and would need 2 1/2 years of treatment.

Since that day Darcy has had a port-a-cath line in, 7 general anaesthetics, 6 blood transfusions so so much chemotherapy. Lots of nights in hospital at our local hospital and in Bristol. 1 anaphylactic reaction to chemo requiring emergency care/adrenaline and we still have 2 years to go, she is amazing such a warrior and takes it all in her stride. She really deserves a little bit of happiness in a couple of nights away, feeling ‘normal’ with her twin brother for just a weekend. Her brother has had to fly solo at school since Darcy’s diagnosis and I’m so incredibly proud of his bravery too because before this they were glued at the hip.

Thank you to everyone at the Ben Saunders foundation you have no idea how much we need this.