Danielle Walker

My Story - Danielle Walker, age 37 years old, was diagnosed in September 2024 with metastatic insulinoma

I was a fit and healthy 35-year-old mother of three young children, Harry then 11, Zachary 4 and Matilda 2. In between school runs, I led a normal, happy life, working as a self-employed hairdresser with my own salon with my sister and sister-in-law, which I loved. I lived for my family and for planning days out and holidays with my husband and the children, often with our wider family.

Being from a large family of six sisters and one brother, we have always been very close. So unsurprisingly, when we all learnt about this diagnosis, my family were there supporting us in any way they could.

I woke up one morning shaking, confused, drenched in sweat but freezing cold at the same time. I asked the paramedic, “Am I going to die?” She answered, “You very nearly did.” My blood sugar was 0.5 mmol per litre when they found me, although I did not know that at the time. The paramedic explained that it was actually a good thing that this had happened, because now there was a reason for what had been going on and we could finally start looking for answers.

They gave me a sugary hot chocolate and biscuits to raise my blood sugar and took me to North Tees Hospital. On the way, the paramedic told me how lucky I was and that I should have been in a diabetic coma at that level. I became emotional thinking about how close I had come to leaving my children behind. At the same time, I felt relief. Something real had finally been found.

For weeks leading up to that morning, I had felt constantly out of it. I had brain fog, trouble concentrating and was forgetting conversations. My eyes looked different, almost like someone else was looking back at me. What scared me most were the episodes where I would do things but have no memory of how I ended up where I was or what I had been doing.

The first time this happened, I had tonsillitis. John told me I got up acting as though I was drunk, laughing and saying I was starving. He made me breakfast and about 40 minutes later I started to feel like myself again. I was shaking, freezing cold and had no idea how I had got dressed or gone downstairs. I cried because it felt like someone had pressed a button and suddenly I was there with no memory of how.

A week later, while ironing the children’s school uniforms, I could not do the simplest things. It took me three hours to sew a few stitches into my son’s blazer. My brain just would not work. I became more confused and went to bed, knowing something was very wrong.

I went to my GP the next day and cried the moment she asked how she could help. I told her I did not feel safe being alone with my children. Blood tests came back normal, which was reassuring, but it did not explain what was happening.

A few days later, I woke up to find things scattered all over my bedroom. I did not remember doing it. I had no idea what time it was or where John was. I panicked and rang him. He was two hours away for work and came straight home. My sister came to stay with me. That night, I went to A&E they did blood tests and a brain scan but found nothing and referred me to neurology, thinking it might be seizures.

Later that night, John tried to get me out of bed and I became unresponsive. He called an ambulance. This time, doctors realised my blood sugar was dropping dangerously fast. No matter what I ate or drank, it would not stay up. My fingers were sore and bruised from constant finger pricks. I was put on a glucose drip. I still thought they would find a quick fix and send me home.

Instead, I spent almost eight weeks in hospital.

Being a mum and having insulinoma has been petrifying at times. In the beginning, I did not feel safe being on my own with the children when my hypos were so bad. Even now, finding time to eat properly and manage my blood sugars and take my medication alongside life is difficult. The fatigue and sickness after treatments, but still having to get up and try to look as normal as possible and get the children up and ready and out to school. The constant hospital appointments and arranging the children around them. The months I spent in hospital on a constant glucose drip because there was no other way to stabilise my blood sugars. The loneliness and emotion you feel from trying to be strong for everyone around you when you really are not. The days when everything gets too much and you have to let it all out in secret so no one sees you upset. The financial burden of not having a wage coming in and being unable to work, but not being entitled to barely anything for such a long period of time. Asking for help when you have always been independent. I did not think it could be any worse, but then it did, and I was told it had transformed into an extremely aggressive small cell neuroendocrine carcinoma.

On the third day in hospital, a doctor mentioned the possibility of an insulinoma. Blood tests later confirmed elevated insulin levels. A CT scan did not clearly show a tumour on my pancreas but revealed multiple lesions on my liver. A biopsy confirmed the tumours were neuroendocrine in nature. I was referred to Freeman Hospital in Newcastle. Further scans later showed a small lesion on the tail of my pancreas. Genetic testing thankfully ruled out MEN1.

Because my blood sugars were so unstable, doctors decided the safest option was Selective Internal Radiation Therapy to my liver. I was fortunate to receive approval even though it was not routinely available on the NHS. The procedure took place on 28 February. Afterwards, I had to be closely monitored as the tumours released large amounts of insulin before they began to shrink.

I was discharged from hospital on 21 March, just in time for my daughter’s third birthday. Being home for that day meant everything.

The treatment made me extremely sick for months. My blood sugars still fluctuated, but scans eventually showed the tumours had shrunk by more than 50 percent. It was the first good news I had had in a long time.

Later scans showed new abnormalities in my lymph nodes. A biopsy confirmed my worst fears. My insulinoma had transformed into an aggressive form of cancer, a high-grade small cell neuroendocrine carcinoma. Surgery was no longer an option. I was told the only treatment available to me in the UK was palliative chemotherapy.

We then found a clinic in Germany offering dendritic cell therapy. Each treatment cost €35,000. To give me more options and more time, we remortgaged our family home for £110,000. Fundraising was not something I ever wanted to do, but it became our only option.

Thanks to the support of my parents, I was able to start treatment in Germany. On 16 July, I flew to Munich where blood was taken and processed to create the dendritic cells. A week later, the cells were injected back into my body.

After four cycles of chemotherapy, scans showed mostly positive results. The liver metastases showed necrosis and most nodal disease stabilised. A PET CT scan later showed my tumours had receptors for PRRT. Although PRRT is not available on the NHS for high grade tumours, I travelled to Berlin and received my first round of PRRT on 15 December.

My dad is there at every appointment with me, picking me up after every bit of bad news. My mum has been with me through hours of chemotherapy sessions and helped pay for my first treatment in Germany. My brother has planned a charity fundraiser to help raise money towards treatment, whilst my sisters have taken turns staying over with the children and doing school runs whilst I was in hospital for weeks on end, or in Germany for tests and treatment, all whilst working full time and having families of their own. My sister Sam plans trips in between treatments to take us away and make as many memories with the children as possible, trying every spiritual and herbal treatment that could possibly help me, sending me for regular beauty treatments to lift my spirits and make me feel better, crying with me when I needed to cry. My husband has been by my side through everything, always saying just what I need him to when I need him to, doing absolutely everything for me and the children as well as working full time. I am so lucky to have them all in my life. I do not know how we would have managed without them.

But I also know how hard it has been for them all after losing my sister suddenly in 2018. Everyone was left traumatised and heartbroken and as a family we have still not got over this. I really wish I could have spared them this heartbreak as well.

The hardest part emotionally is knowing what this is doing and will do to my family, and the guilt I feel even though I know this is not something I have done to myself. Every time I look at my children, all I can think about is how they will live the rest of their lives without their mummy. I think about how scared my husband must be about losing his wife and the mother of his children, and the impact it will have on him. I think about my parents and how they will cope with losing another daughter when they are still so broken from the last time, and my brother and sisters and nephews and nieces who are all fighting with me and willing me to get better. I am not sad for me. I am sad for everyone else.

I hope that by sharing my story it helps raise awareness of this awful disease that so many medical professionals have never come across. I was told when I was diagnosed that it is something you learn about in textbooks but rarely see in real life. Living with such a rare disease is frightening and does not fill you with confidence when so few people have experience of treating it. I am extremely grateful to Enola for all the work she has done for this charity and for the support she has given me, and I will help in any way possible for anyone else going through this in the future.

To support me, my husband, and our children, please donate or share using the link below.

Link for GoFundMe page
https://gofund.me/c0085e10c

I am still fighting. I am scared, exhausted, and determined. While there is any hope at all, I will grab it with both hands for more time with my children and my family.

Thank you for taking the time to read my story. Danielle Walker

Compliance Notice

This story is shared with Danielle Walker’s informed consent to raise awareness of insulinomas. Any donations are voluntary and made directly to Danielle Walker and her family via an independent fundraising platform. Insulinoma Charity UK does not receive, manage, or distribute these funds. As a registered charity, it operates in accordance with Charity Commission regulations and does not make personal financial gifts. Its role is limited to awareness raising and facilitating public understanding through the sharing of lived experiences.

Enola Wright8 January 2026