A collection of stories from children, young people, parents and carers about their healthcare experiences.
Tristan's story
Many parents and carers wait months, even years, for their child to be diagnosed. But questions often remain about what that rare disease means for them in the long term. Tristan and his mum, Celia, talk about their journey and why they believe bringing a research institute into Cambridge Children's Hospital will be a game changer for families.
Max and Parker's story
Katherine and Siobhan met in hospital when their boys were being treated for similar conditions. They became friends, finding support and comfort in their shared experiences, something that continued once Max and Parker were able to go home. Getting home is an important goal for families, which is why the vision of Cambridge Children's Hospital is treat children and young people in their communities, wherever possible.
Oliver's story
Cambridge Children's Hospital will support the child who is poorly, but also the whole family. That's because being in hospital affects everyone. Oliver has spent most of his life in and out of hospital, with his sister, Macie, by his side. Macie says their journey may have been smoother, if they'd had mental health support from the start.
Reuben's story
Whole Genome Sequencing is a vital avenue of exploration for families of children with undiagnosed and complex conditions. At the heart of the new Cambridge Children's Hospital will be our Centre for Genomic Medicine, working to bring hope and answers for families, like Reuben's.
Alfie's Story
It was March 2021 when Laura’s son Alfie suffered a serious brain injury after being knocked off his bike cycling through his home town of Wisbech. Like so many teenagers, the 15-yr-old was not wearing a helmet, and had been talking through his headphones, when he got hit by a car.
Niall's story
On New Year’s Eve 2018, Niall from Wisbech started chemotherapy at Addenbrooke’s Hospital. It meant huge upheaval for the whole family. However, Niall's mum Claire believes it's important that the region’s first dedicated children’s hospital is built in Cambridge, a place already trusted to provide excellent children's healthcare.
Crown's story
The link between mental health and physical health is at the core of the Cambridge Children's Hospital vision. Having a physical condition can have a big impact on how you feel psychologically, and vice versa. As a child, Crown from Luton was diagnosed with a rare disorder, which put a huge strain on her young shoulders. She says having someone ask about her mental health would have given her the chance to open up.
Liam and Jo
Liam grew up in the Cambridgeshire town of March. As a teenager, he struggled with complex mental health challenges, spending many months at The Darwin Centre in Fulbourn. He believes a children's hospital dedicated to treating mental and physical health together will help reduce stigma for young people like him. Thank you, Liam and mum, Jo, for telling your stories.
Mellie's story
Mellie was diagnosed with anorexia at the age of 12. Four years later she was referred to The Phoenix, a specialist unit for complex eating disorders. The Phoenix will move into Cambridge Children's Hospital when it opens.
Summer's story
Drawing on her experience as an inpatient at a specialist eating disorders unit, 23-year-old Summer from Essex has become a passionate advocate for Cambridge Children’s vision of integrated care – where a child’s mental and physical health are treated together.
Olina's story
For the best part of a decade, Olina has lived with two hidden disabilities. Over time, through finding the right doctors, taking medication and understanding her limits, she lives a full life. Now 17, Olina, from Cambridge Children's Press Pack, is committed to raising awareness.
Alisha's story
Born at Addenbrooke's Hospital at just 24 weeks gestation, Alisha has overcome multiple hurdles to get where she is today. Her passion for the Cambridge Children's Hospital project is her way of giving back to those who saved her life, but also to ensure the new hospital is the best it can be. Sixteen-year-old Alisha, who is a member of our Press Pack, has written her story and also recorded some feedback about what would make a difference to her, and others.
Jasmine's story
Sixteen-year-old Jasmine loves musical theatre, adores her dog and aspires to be a vet. But as a child Jasmine was confined to a wheelchair for three years, while doctors tried to understand what was wrong.
Sarah's story
Sarah, 17, has multiple complex disabilities and has been in and out of hospital since she was born. As a member of Cambridge Children's Press Pack, Sarah has written about her experiences, including losing her sight in 2021. She says life might be harder for her than the average person, but she just does things differently. This article includes an excellent video interview that Sarah did with her fellow Press Packer, Alisha.
Phoebe's story
We’ll understand the person, not just the patient. When Phoebe got sick, it didn’t mean life as she knew it had to stop. It just meant we had to work harder to help her live it.
Tessa's story
At 18 months old Tessa Brook was diagnosed with lingual sarcoma, a cancerous mass on her tongue.
Flynn's story
Adopting a holistic approach has transformed the care of a severely disabled seven-year-old Cambridge boy.
Anita's story
Anita Grant joined Cambridge Children's Network in memory of her daughter Jess, who died of a rare cancer when she was 15. Jess felt passionately that a dedicated children's hospital for the east of England was desperately needed. She even wanted to work there once it opened. Anita is making sure Jess's voice - her ideas - are heard.
Lily's story
At the heart of the new Cambridge Children's hospital, a Global Genome Institute will work to improve diagnosis and treatment for even the rarest conditions. Many children and young people with rare diseases have joined Cambridge Children's Network to get involved in how the new hospital will look, feel and care. One of them is Lily. For Rare Disease Day 2022, Lily and her mum Michelle explain what it's like to be a 'rare' family.
Ehlana and Angela
A 'whole child' approach where there is no differentiation between mental and physical healthcare is at the core of Cambridge Children's vision. Ehlana was admitted as an inpatient after struggling with her mental health for some time. She and her mum, Angela, believe an integrated approach to care will make a huge difference.