Mum in race against time to save son, 4, with rare neuroblastoma cancer after 'fight' for diagnosis

Mum in race against time to save son, 4, with rare neuroblastoma cancer after 'fight' for diagnosis EXCLUSIVE: Four-year-old Zach Prempeh's cancer returned after 18 months of intensive treatment. Now his mum Edwina is racing to raise £339,000 for treatment in Rome that she hopes could save her little boy's life A desperate mum is racing against time to raise £339,000 for treatment that could save her four-year-old son’s life. Zach Prempeh was just two years and eight months old when he was diagnosed with neuroblastoma. After 18 months of intensive treatment, his family was given the devastating news that he had relapsed - with just one block of his frontline treatment left. Now his mum Edwina Fleming, 40, is fundraising for treatment abroad. She said: “This is life-saving treatment that could potentially save Zach’s life and we have such a short amount of time for when we need to get to Rome in order to access this.” Zach is currently receiving chemotherapy, but has had a range of treatments since his diagnosis including immunotherapy and a complex 12-hour operation to remove his tumour. With little appetite, he relies on feeds through a nasogastric (NG) tube. Edwina has been searching for other possible treatments and hopes CAR T-cell therapy in Rome could give Zach another chance. “When you relapse from neuroblastoma on the NHS, the treatment options are very limited and as a mum you’d do anything for your child, you would give anything to make your child better," she said. Zach’s symptoms began shortly before his second birthday, with repeated vomiting and severe constipation. Describing her fight for a diagnosis, Edwina said: “No-one knew he had a tumour growing inside him but I was going back and forth with my GP and local hospital continuously. I was fighting to get a diagnosis.” However, she never imagined the diagnosis would come back as cancer. She said: “I’d never thought in a million years my son had cancer, I thought he may have had an allergy to milk protein - no parent would believe their child has cancer.” Around eight months after she first raised concerns, Zach was diagnosed with neuroblastoma, a rare cancer that develops from immature nerve cells, mostly affecting children under five. Around 100 children are diagnosed with it in the UK each year. Recalling the moment she found out, Edwina said: “It was one of the most heartbreaking gut-wrenching feelings that you could ever feel in your life. I was absolutely broken. All I could think was, why not me? Why him? Why my beautiful child that I’ve carried in my stomach for nine months?” During his treatment, Zach also faced periods apart from his mum. His MIBG therapy, which uses radioactive iodine to target cancer cells, meant contact had to be restricted. Edwina said: “During his MIBG treatment, Zach was in a cubicle because of radiation and I was in a small room on the other side. "I would have to wear PPE in order to go into the room. The nurses would have to wear a pager in order to monitor my radiation levels. It was an intense treatment. Zach found it difficult, I would try to go in there as much as I possibly could.” Then, as Zach approached the end of his frontline treatment, the family learnt his cancer had returned. Edwina said: “We was nearly at the end of frontline treatment, we only had one more block to go and unfortunately Zach relapsed. It had grown during that period.” Despite everything he’s endured, Zach loves dressing up as a Power Ranger and watching his big brother play football. Edwina said: “He’s an absolute bundle of joy, he’s playful, kind and resilient and is always willing to take any new challenges that he may be up against.” Much of Zach’s treatment has meant lengthy stays in hospital, where his vibrant personality has made him a familiar face. His mum said: “He’s GOSH famous - everyone knows him at Great Ormond Street Hospital.” Zach knows he has cancer but is too young to understand the severity of his illness. Edwina said: “Because of his age he doesn’t understand the severity of what cancer is, but he has an understanding that he is poorly. I’m a fighter and Zach is a fighter. When you have cancer the first thing you need is the fight to keep going and I’m always letting Zach know how special he is and giving him words of wisdom.” The four-year-old should have started Reception in September, joining his big brother at school. Instead, treatment has kept him from many of the everyday joys of childhood and forced his mum to say no to a lot of things due to his health. Edwina said: “A lot of things have been stolen from Zach due to him being poorly and he isn’t able to do a lot of things that a child of his age should be able to do.” But on Saturday, October 24, Edwina was able to say yes as the little Arsenal fan had a day to remember when the club invited him to watch their match against Everton. The invitation came after Zach was too unwell to meet the players during their visit to Great Ormond Street Hospital. Describing the experience, Edwina said: “The weekend was absolutely magical, it was truly a dream come true for Zach and my eldest, Alex. They [Arsenal] couldn’t do enough for us. They made us feel like VIPs, it was just a surreal feeling for both my boys. To be able to see Zach smiling from cheek to cheek. I can’t put into words the feeling that gave me as a mother. It gave me one of the best feelings a parent could ever have.” Zach’s illness has also taken its toll on his big brother Alex-Junior, 11, who has faced long periods apart from both his sibling and his mum. As well as caring for Zach in hospital, Edwina juggles being there for both of her boys - but Zach's treatment meant long stretches away from her eldest. She said: “It’s hard for my 11-year-old, he’s away from his sibling and his mum for long periods of time. I also find that very very difficult of course, I’m away from my eldest child. It’s very hard on the best of times but I have to think about the bigger picture which is trying to get my child who’s poorly into remission and pray and hope for better days to come.” Edwina hopes Zach can access treatment in Rome by the start of November. She said: “If we don’t raise the £339,000 by the end of the week, it will delay the start of his treatment. Zach’s cancer could progress during this time, meaning he may no longer be eligible for the treatment. And then, there may be no options left for my beautiful boy. "My ultimate goal is to get my child better, that’s what gets me through. The hope and positivity that treatment will work and Zach will get better.” His appeal, run by Solving Kids’ Cancer UK, has raised £142,900 towards its £339,000 target. The money will cover treatment, travel and accommodation. To find out more about Edwina's fundraiser and how to donate, click here.