Maya is a strong, stubborn girl, who knows what she wants and loves nothing more than playing with her baby dolls, or being outdoors and jumping on her trampoline. As the youngest child, she likes to boss her siblings around and dreams of becoming a paediatric doctor when she grows up.
But tragically, when she was only three years old, Maya was admitted to hospital and diagnosed with stage four high-risk neuroblastoma, a devastating and aggressive childhood cancer that affects only around 100 children in the UK each year.
She’s been through so much treatment to get well again but her battle with cancer is far from over. High-risk neuroblastoma returns in almost 50% of children and when it does, the chances of long-term survival drop to less than 10%.
Maya’s family are desperate for her to access a clinical trial in New York that could help keep her cancer away and have been urgently appealing for your help to raise the £243,000 needed for her to do so. Unfortunately, time has not been on Maya’s side. Treatment is required to begin within six months of finishing immunotherapy and 45 days of scans, which for Maya is 25th February 2019, and the family are still some way short of their target.
Due to the urgency of the situation, our Board of Trustees has taken the decision to set aside reserve funds to cover the shortfall needed to get Maya to New York to begin the first part of her treatment. In total the clinical trial consists of 5 trips to New York over the course of a year for treatment, plus a series of 8 assessment scans that continue for another year. If we don’t act now, Maya will lose the opportunity to access this trial. Whilst we know that Maya is currently free of disease, we also know that a child’s best chance of beating neuroblastoma is when they are fighting it for the first time.
We are encouraged by the many fundraising events planned for Maya’s campaign in the coming months and the commitment of all involved to continue to urgently fundraise for her treatment, so Maya can go on to successfully complete her potentially life-saving treatment. It’s also vital to replenish our reserves to allow us to be there for the next child who needs our help. Unfortunately, our resources are limited, but we will always do whatever we can to help every child and family who find themselves in a similar situation.
Thank you to everyone that’s supported and continues to support Maya’s campaign.
“There were virtually no signs at all, just unexplained lethargy and a persistent fever which was always seen as a ‘viral infection’,” says Dellanie.
After ten weeks of uncertainty surrounding Maya’s health, Dellanie and Terry heard the words that would change their lives. ‘Your child has cancer’.
Maya was diagnosed with stage 4 high-risk neuroblastoma in her left adrenal gland.
“It was so overwhelming and gut-wrenching. Every parent’s worst nightmare. We were told if her tumour had been left untreated that she would have only had a few weeks to live,” continues Dellanie.
Over a 20-month period, Maya endured ten cycles of chemotherapy, stem cell harvest, surgery, stem cell transplant, high-dose chemotherapy, radiotherapy, differentiation therapy and immunotherapy. She also had countless injections, blood and platelet transfusions and general anaesthesia. She really went through the mill, and her beautiful brown hair fell out.
“Everything in our world had turned upside down,” recalls Terry. “I felt if she goes, I’m going with her.”
Maya’s mum, Dellanie, describes the time as ‘harrowing’. “As well as mucositis, Maya suffered from haemorrhaging, horrendous nosebleeds and VOD (veno-occlusive disease) of the liver,” says Dellanie. She and Terry suffered as parents too.
“We didn’t realise then how completely exhausted we were as parents. Just imagine the pain of watching your child go through this; putting on a brave face for your child when you don’t always feel that strong,” says Dellanie.
Fortunately, the family had great support. “We are forever indebted to all the wonderful people, and the excellent NHS team looking after our precious girl Maya,” says Dellanie.
Maya has recently come to the end of her frontline treatment, and despite ‘hot spots’ evident on her October 2018 scans, doctors don’t think it is active disease. This means that there’s no further treatment planned in the UK.
Knowing how aggressive Maya’s cancer is and the high relapse rates “as oncology parents, we are not comfortable accepting a wait-and-see approach,” says Dellanie.
Maya’s family are hoping Maya can access the Bivalent Vaccine clinical trial at the Memorial Sloan Kettering Cancer Centre in New York, to try to increase the chances of the cancer staying away. This treatment is not available in the UK.
“We shall continue to fight. We are all warriors together to beat this childhood cancer that has started to rob Maya of her childhood during the past two years. We’ve got this, folks!”
Maya’s family desperately need your help to keep her cancer away so they are urgently appealing for funds. They need to raise £243,000.
How you can help
There are many ways you can help Maya: by making a personal donation; holding a fundraising event; getting sponsored to take on a challenge.
Download our free Maya resources (below) to support your fundraising.
You can make a donation via this page, or if you’d prefer to text donate, text MYNA99 and your amount £1-£10 to 70070.
If you’d like help support Maya’s campaign, please contact our fundraising team on 0207 284 0800 or firstname.lastname@example.org.
“We are overwhelmed with gratitude to family, friends and the community, who continue to show their support and love for our family,” say Dellanie and Terry.