Gyrwe Gill

Never did I imagine… Never did I imagine that when you were sixteen, we would be shopping for wigs instead of make-up and clothes. Never did I imagine you having chemotherapy and radiotherapy. Never did I imagine that you would never reach your twentieth birthday. Never did I imagine that I would one day have to plan your funeral. Never did I imagine a life without my daughter, or that your brother would have to live without his sister. No parent should ever have to experience this. No young person should have their future taken away by a brain tumour. This is why raising awareness of brain cancer is so important. Behind every diagnosis is a person, a family, a future and so many dreams that deserve the chance to come true. I will continue to share Charlotte's story, raise awareness and support research in the hope that one day other families won't have to experience this heartbreak. For Charlotte. For all those affected by brain tumours. For a future with more hope. charlottesbag.org/ 100% of every donation goes directly to brain tumour research in Charlotte’s Lab at King’s College Hospital, London. No salaries, overheads, advertising or merchandise.

The Journal of a Mother Whose Daughter Had a Brain Tumour Diagnosis to Death: 951 days Age 19 18.2.97 - 24.2016 Charlotte’s medical notes eventually filled around 2,500 pages. Just think about that for a moment 2,500 pages documenting the medical journey of a girl who was only 16 when she was diagnosed and just 19 when she died. Behind every page was another appointment, another investigation, another treatment or another decision about her care. Those pages represent a young life consumed by a disease that stole so much from her and a family desperately hoping for more time. Charlotte was never just a medical file or a diagnosis. She was a daughter, a sister, a friend, and a young woman with a future ahead of her. This is why brain tumour research matters. Because behind every medical record is a real person, a family who loves them, and a future they desperately want to protect. Anyone can be affected by a brain tumour. I never thought it would happen to our family, but it did. You never imagine that the words “your child has a brain tumour” will ever be spoken to you. You think these things happen to other people, to other families. Until one day, you become one of those families. When Charlotte was diagnosed, our world changed forever. Nothing can prepare you for the fear, the uncertainty or the heartbreak of watching your child face something so devastating. I share our story because brain tumours don't discriminate. They can affect anyone, at any age, and they change the lives of not only the person diagnosed but everyone who loves them. Our family became part of a world we never wanted to know, and we continue to share Charlotte's story in the hope that greater awareness and more research will bring a better future for others. Please consider donating to Charlotte's BAG to help fund vital brain tumour research. Research carried out in Charlotte's Lab at King's College London covers all types of brain tumours, helping the wider brain tumour community. We are a small, entirely self-funded charity, which means 100% of your donation goes directly to research No salaries. No overheads. No advertising. No merchandise. We have so far raise £413,500 and our next target is £500k charlottesbag.org/ kch.nhs.uk/news/kings-neuros… Please follow RT with thanks

The Journal of a Mother Whose Daughter Had a Brain Tumour Diagnosis to Death: 951 days Age 19 18.2.97 - 24.2016 13 years ago 20th October 2013 This morning, I made tea, as I did every morning. Charlotte loved this time of day  having her first cup of tea, checking her computer, and sitting with Nala, her cat, curled up on her lap. It was one of those familiar little routines that made up our everyday life. Charlotte had her first cup of tea when she suddenly said she felt a lump in her throat when she swallowed. My immediate reaction was fear. Has the cancer spread? It was frightening how quickly your mind went to the worst possible place. We knew that her tumour was confined to the area around her brain and spine, within the spinal fluid, so we knew it couldn't simply spread elsewhere in the way we feared. But when your child has an aggressive brain tumour, every new symptom brings another wave of worry. What we didn't know at the time was that the radiotherapy, combined with the position of Charlotte's spinal tumours, meant that her oesophagus was also being badly burnt. We hadn't realised how much this would affect her. Something as simple as swallowing  something most of us never give a second thought to was becoming another problem for Charlotte to face. We would later discover just how significant this would be, with the damage having a massive impact on her ability to eat over the coming months. It's hard to explain how cancer changes everyday life. One minute, you're making tea and watching your daughter check her computer with her cat on her lap. Next, you're worrying about another symptom and what it might mean. These are the moments people don't always see when they think about a brain tumour. It's not just the diagnosis, the hospital appointments or the treatment. It's the way something as ordinary as a cup of tea can suddenly become a source of fear. I remember these moments because they were part of Charlotte's journey, and I want people to understand what she went through. This is why I continue to share her story. Behind every diagnosis is a real person, a family, and a life changed in ways nobody could have imagined. Through Charlotte's BAG, I hope we can help fund research that gives future families more answers, better treatments and more hope. Please consider donating to Charlotte's BAG to help fund vital brain tumour research. Research carried out in Charlotte's Lab at King's College London covers all types of brain tumours, helping the wider brain tumour community. We are a small, entirely self-funded charity, which means 100% of your donation goes directly to research. No salaries. No overheads. No advertising. No merchandise. With thanks charlottesbag.org/

Charlotte's Brain Tumour Journey The live of a teenager living a terminal brain tumour Diagnosis to Death: 951 days Age 19 18.2.97 - 24.2016 13 years ago 16th October 2013 Charlotte had come off the original chemotherapy, which would cause her hair to fall out, and had moved onto a different one (Temozolomide) that we understood would not cause hair loss. We had also been led to believe that the radiotherapy would only cause her to lose a little hair in the area being treated. We thought this would be a small patch at the base of her skull on the left-hand side. While Charlotte was having her treatment, the staff began talking about hair loss. They seemed to assume that Charlotte already knew she would lose all her hair and be completely bald. Charlotte had her hair shaved off at home in August but it had started to grow back. They also explained that there was a possibility she could lose her eyelashes as a result of the radiotherapy.Her eyelashes were beautiful. They were so long that even the staff in the department had thought they were false. Charlotte was inconsolable. She was totally devastated and broken by the news She was only 16, and she had already been through so much. We had thought we understood what to expect, and suddenly she was being faced with the possibility of losing not just her hair, but her beautiful eyelashes too. I cannot begin to describe how heartbreaking it was to see her so distressed. Hair might seem like a small thing to some people, but to Charlotte, it was a huge part of how she saw herself. She was already trying to come to terms with a brain tumour diagnosis, and this felt like yet another thing being taken away from her. Looking back, I wish we had been better prepared for that conversation. Charlotte deserved to be told gently, with care and understanding, rather than having to absorb such devastating news while she was already struggling to cope. Please consider donating to Charlotte's BAG to help fund vital brain tumour research. Research carried out in Charlotte's Lab at King's College London covers all types of brain tumours, helping the wider brain tumour community. We are a small, entirely self-funded charity, which means 100% of your donation goes directly to research. No salaries. No overheads. No advertising. No merchandise. charlottesbag.org/

People might wonder why, nearly thirteen years after losing Charlotte, I still carry on telling her story. Why I still talk about her diagnosis, her treatment, her fears and the devastating impact a brain tumour had on her young life. The answer is simpl Charlotte’s story matters. Charlotte was just 16 when she was diagnosed with a rare and aggressive brain tumour. She was only 19 when she died. She should have had a lifetime ahead of her, but instead, she faced things that no young person should ever have to experience. What makes Charlotte’s story so unique is that she documented her journey herself. Through her YouTube videos, she gave us an insight into what it was really like to be a teenager living with a brain tumour. She allowed people to see beyond the diagnosis and into the reality of her everyday life. She showed the fear, the uncertainty, the physical changes and the emotional struggles. She was honest about what was happening to her, even when it was frightening and difficult to watch. Charlotte continued making videos until the day before she was placed into an induced coma. By then, the tumour had taken so much from her, including her ability to speak. I had to provide the voiceover for her final videos. Charlotte gave us something that cannot be recreated: her own account of living with a brain tumour as a young person. These are not simply medical records or somebody else's recollections of what happened to her. They are Charlotte's words, her feelings and her experiences, shared in her own way. I wish more than anything that Charlotte could see how many people have watched her videos, how many have connected with her and how far her voice has travelled. I carry on telling her story because there may be another teenager sitting in a hospital room, frightened and overwhelmed, who needs to know they are not alone. There may be a parent desperately trying to understand what their child is experiencing. There may be someone who has never thought about what a brain tumour means beyond the medical diagnosis. Charlotte helps people understand. I also tell her story because brain tumours need greater awareness, more research and better treatments. Behind every statistic is a person with a family, a personality, hopes and dreams. Charlotte was not a statistic to us. She was our daughter, our sister and a young woman with so much to give. Thirteen years on, I still miss her every single day. Telling her story doesn't mean I have found a way to make peace with losing her. It doesn't mean the pain has disappeared. It means I have found something I can do with the love that remains. I cannot change what happened to Charlotte. I cannot give her back the future she deserved. But I can make sure people know who she was, what she endured and what she wanted to achieve by sharing her experiences. Her voice is still reaching people. Her experiences are still helping others understand. And her legacy is still growing. That is why I continue to tell her story. Not because I cannot let go of the past, but because her story still has a future. I am Charlotte's mum. I will always be Charlotte's mum. And for as long as I can, I will make sure her voice is heard. Because nineteen years was nowhere near long enough for the world to know Charlotte. And thirteen years without her will never be long enough for me to stop telling her story. youtube.com/watch?v=L0Tz_xfg…