Annabel is a happy, smiling 5-year-old who wants to be a nurse when she grows up. Her family just wants her to be able to grow up. In April 2023, aged 4, she was diagnosed with Stage 4 high-risk neuroblastoma and given 40-50% chance of long-term survival at diagnosis. After completing 15 months of treatment with the NHS, Annabel's family are fundraising to go to America for treatment that isn't currently available in the UK.
Annabel was a normal happy four-year-old when she started complaining about back pain.
After five weeks of getting sent home from the GP and A&E - being told it’s a virus – Annabel’s parents finally got the news every parent dreads. Annabel had Stage 4 high-risk neuroblastoma, a rare and aggressive childhood cancer that has a 40-50% chance of long-term survival at diagnosis. The hospital found a tumour near Annabel’s kidney and discovered her bones were bulging with cancer cells - the source of her crippling pain. Annabel had lost 30% of her body weight and could hardly walk.
Although her family was devastated, at least it meant treatment could start and take away her pain. Over 15 months, Annabel has braved: chemotherapy, high-dose chemotherapy, stem cell harvest, surgeries, proton therapy, immunotherapy, hair loss, nasal feeding, and life with intrusive medical lines. She’s missed her first year at school and making friends. But she’s done it all with a smile on her face and trademark Annabel sass! Even finding time to have fun and make friends at hospital during her darkest days.
For children with high-risk neuroblastoma, like Annabel, the survival rate is much lower than many other childhood cancers. Upon relapse, survival is greatly reduced. The FDA has approved DFMO in the US, a drug that aims to prevent relapse, and the approval process is underway in the UK but is unlikely to be soon enough for Annabel, as she must enrol on the DFMO study shortly after her last treatment ends. As her only option to access the drug it to travel back and forth to America, her mum and dad - Mike and Libby - are asking for your help to raise funds for this by October. Following changes in the cost estimates issued from the treating hospital in Penn State we have been able to reduce the funds required to access DFMO from the original £105k target. Thanks to all the incredible support of Annabel’s campaign and with the fundraising activity currently planned to the end of the year, enough funds are likely to be available to enrol Annabel on the DFMO study in October. Any funds raised beyond this will be a contingency for any unforeseen circumstances and ensure the family have sufficient provision for pastoral support, further treatment if required and support any changes in associated costs to access DFMO.
I was watching Celebrity Bake Off for Stand Up to Cancer when I heard a mum talking about her son’s cancer story. Annabel was beside me on the sofa where she’d been for the last month. She was in so much back pain that she’s couldn’t move. So we watched a lot of TV together. A mum came on screen and described her son having exactly the same symptoms. Then she said something that cut me like a knife. ‘He was complaining about back pain. A few months later, he was gone.’ I knew in my gut that was what Annabel had. But no-one was taking us seriously. Our GP and A&E kept sending us home saying “Children don’t get back pain.” “She’s not consistent about where it hurts.” “It’s most likely a virus”. “Come back if it gets worse…”
It got worse.
After five weeks, my beautiful little girl was immobile and a bag of bones. We carried her to A&E and refused to leave until we got answers. After a full day of tests and an overnight stay, we finally got answers. “We’ve found masses around Annabel’s kidneys. Do you know what we mean by masses…?”
They took blood and samples – and admitted us to the children’s oncology ward immediately – but it was weeks until they could diagnose exactly what type of cancer Annabel had. It was an agonising wait. We still hoped it would be an ‘easy’ cancer to treat. Boy, were we wrong.
Our consultant sat us down and she she was so sorry but Annabel has one of the most aggressive and fatal types of childhood cancer. It would take about 18 months to treat and Annabel had a 50/50 chance of survival. As a mum, there’s nothing worse you can hear. Luckily, our amazing consultant KNEW we could beat this. And our long and stressful cancer journey started.
Annabel has been through so much since her diagnosis in April 2023. Her parents have almost lost track of all the procedures she’s endured, alongside months of daily injections, numerous blood and platelet transfusions, painful bone marrow aspirates, been fed through an NG tube, had countless x-rays, MRI and MIBG scans.
Side effects of this aggressive treatment have included vomiting, nerve and joint pain, loss of appetite and weight loss, and tiring easily, which means she often uses a wheelchair when out and about.
The chemotherapy Annabel received at the start of treatment, meant losing her long ‘princess hair’ and is often mistaken for a boy. A mistake she’s very quick to correct!
Her treatment and scans also put her at a higher risk of getting secondary cancers in the future, and will leave her with lifelong additional needs.
Treatment has been hard on the whole family. Her teenage sister has been left home alone a lot while her parents have had to stay in hospital. Annabel’s dad has taken a career break to care for Annabel full-time. And her mum has worked long hours to keep the family and her business afloat between hospital stays.
Annabel has missed her full first year at school. Although she’s proud to model her uniform and can’t wait to start! She was even a model for Tommee Tippee when she was a newborn.
Our beautiful little warrior also won an award for her bravery. We can’t wait to see what she achieves next!,' says mum, Libby.
After 15 months of treatment, Libby and Mike are now focussing on their daughter remaining cancer free. For children with high-risk neuroblastoma, like Annabel, the survival rate is much lower than many other childhood cancers. Upon relapse, survival is greatly reduced.
The FDA has approved DFMO in the US, and the approval process is underway in the UK. It will take too long to be approved and available on the NHS in time for Annabel. There is a possibility that the pharmaceutical company that owns the license outside of the US will provide the drug on an expanded access basis in the UK prior to an approval decision by the MHRA and then NICE. In this instance, Annabel may be able to access the drug under her UK consultant. However none of this is guaranteed and until there is any certainty, the family will continue to pursue the treatment in the US.
In December 2023 the FDA approved DFMO in the United States because the data showed that children who received DFMO for two years had less than half the risk of relapse than the children who did not receive DFMO.
Annabel wants to be a nurse when she grows up. We just want her to be able to grow up. To put this horrific disease behind her and live as normal a life as she can now, even though she’ll have to deal with long-term health consequences. She’s such a bright and happy girl. She deserves to make her mark on the world.”
Funds raised will go towards helping Annabel and her family. If Annabel no longer needs the funds or is in remission five years post the end of successful treatment, the funds will be used to support other children and families affected by neuroblastoma through our activities. For children with high-risk neuroblastoma, like Annabel, the survival rate is much lower than other childhood cancers. Upon relapse, this rate reduces even further.
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