Three-year-old Daya is a fun-loving, smiley, resilient, soft yet strong little girl. At just eleven months old, Daya was diagnosed with stage four metastatic neuroblastoma. Following chemotherapy, doctors advised that Daya’s primary tumour was inoperable due to its highly dangerous position and so the family chose to look overseas for specialised life-saving surgery. Her family fundraised an incredible £362,000 for surgery in New York to remove the remaining neuroblastoma tumour.

After enduring two and a half years of harsh treatment, including 12 and a half hours of extensive surgery, chemotherapy, radiotherapy, and painful immunotherapy, Daya is now several months into remission. Daya has spent the vast majority of her life in hospital in isolation. Now due to COVID-19, whilst in remission, she is having to continue to isolate at home.

Daya's Diagnosis

Twins Daya and Jasmine were born in 2016. Jasmine was born deaf and with disabilities. 

At around 8 months of age, Pamela noticed a lump in Daya’s abdomen and took her to their GP. Several months later, following a request for an urgent scan, they were rushed to Great Ormond Street Children’s Hospital and were left shocked and fearful when results came back as neuroblastoma. 

“There were moments of calm and fear,” recalls Pamela, “especially when they explained about everything about the tests, the tumour, and the treatment. I wept quietly. I was overwhelmed and shocked. I asked questions.”

She adds: “All sorts of questions were running through my head. The hardest question I had to ask – and believe me I found it hard to get the words out – was ‘do we have time?’.

Hope in New York

As doctors advised that Daya’s primary tumour was inoperable due to its highly dangerous position her parents decided to access surgery at the Memorial Sloan Kettering Cancer Center in New York. For this, the family needed to raise £362,000 which thanks to the incredible response and overwhelming support was achieved and Daya had successful surgery, where all of the visible tumour was removed, in September 2018.

Her father has said: “Daya’s name means compassion and kindness. We chose that name in the hope that its values would give her guidance as she journeyed through life. We had no idea that she would herself become the recipient of so much kindness and generosity from so many people at such a tender age."

Reaching remission 

Daya is now almost four years old and has been in remission since scans showed No Evidence of Disease after her frontline treatment ended in November 2019. 

“We have great relief in reaching this milestone. We are navigating a mixture of emotions. We are also very aware of our friends and families whose children have not survived or are yet to make it to this point. Whilst Daya will not be ‘cancer-free’ for another five years, she has entered remission, which is a chapter we feared we could never reach,” says Pamela.

Ongoing fundraising 

Daya’s family are continuing to fundraise for Solving Kids’ Cancer and have launched ‘Daya’s Burpee Challenge’ for Childhood Cancer Awareness Month this September. Daya’s mum Pamela explains why they are raising vital funds.

"I have seen twenty-four children die during my time in hospital. I have seen energetic lives slipping away. It's for this reason that I continue to raise awareness of Solving Kids Cancer and Neuroblastoma through Daya’s journey. No one should suffer as we all have. We need better treatments. We need a cure. We need children to live. I’ve committed to raising awareness every September during Childhood Cancer Awareness Month. Childhood cancer destroys not just the bodies of the young but it also fractures families.There is nothing worse than living each day without your child. When an elderly person dies you lose the past, when a young child dies you lose the future. I see my friends suffering. I want to do everything I can to make things better. I’d like to see a world where neuroblastoma can be treated and cured".

To get involved with Daya’s Burpee Challenge or to donate, take a look at their JustGiving page here