Freya’s childhood had been shaped by surgeries and uncertainty. We spoke to her mum, Lorraine, who shared their story with us.
Camp reminded them that even in the hardest moments, there is still space for fun and magic. Here’s their story in Lorraine’s own words…
Early years and diagnoses
Our journey as a family began without complication, a smooth pregnancy and birth. But what wasn’t discovered until later was that our baby, Freya, had an Atrioventricular Septal Defect (hole in the heart). At just five months old, she underwent open-heart surgery. It was successful, but it was only the beginning
As Freya grew, more diagnoses followed. At three, she was diagnosed with hypermobility, and by six, she had endured repeated operations for hernias. At nine, in the middle of the COVID-19 lockdown, Freya began experiencing severe pain and exhaustion. At this time, the epidemic made everything harder. Support groups weren’t running, and only one parent was allowed to stay in hospital. The loneliness and fear were overwhelming. After many appointments and procedures, we learned she had Inflammatory Bowel Disease (Crohn’s disease/Ulcerative Colitis) a lifelong condition that changed everything. Medicines failed, school was disrupted, and even Christmas was cut short because she was too unwell.
Just as we were finding our way through that diagnosis, another devastating diagnosis arrived: Chronic Tubulointerstitial Nephritis (kidney disease). Her kidneys were failing. There was no treatment, no cure. In 2024, I, Freya’s Mother, donated my kidney to her, but even now, she still has hospital appointments every four weeks between London and Cambridge. Each visit means blood tests, more time away from school, and more anxious waiting for results.
Our journey as a family began without complication, a smooth pregnancy and birth. But what wasn’t discovered until later was that our baby, Freya, had an Atrioventricular Septal Defect (hole in the heart). At just five months old, she underwent open-heart surgery. It was successful, but it was only the beginning
As Freya grew, more diagnoses followed. At three, she was diagnosed with hypermobility, and by six, she had endured repeated operations for hernias. At nine, in the middle of the COVID-19 lockdown, Freya began experiencing severe pain and exhaustion. At this time, the epidemic made everything harder. Support groups weren’t running, and only one parent was allowed to stay in hospital. The loneliness and fear were overwhelming. After many appointments and procedures, we learned she had Inflammatory Bowel Disease (Crohn’s disease/Ulcerative Colitis) a lifelong condition that changed everything. Medicines failed, school was disrupted, and even Christmas was cut short because she was too unwell.
Just as we were finding our way through that diagnosis, another devastating diagnosis arrived: Chronic Tubulointerstitial Nephritis (kidney disease). Her kidneys were failing. There was no treatment, no cure. In 2024, I, Freya’s Mother, donated my kidney to her, but even now, she still has hospital appointments every four weeks between London and Cambridge. Each visit means blood tests, more time away from school, and more anxious waiting for results.
An Altered Childhood
We’ve always tried to create as normal a childhood as possible, but it’s never been carefree. Unlike other families, we can’t avoid the impact of missed school, cancelled events, regular hospital stays, and the heartbreak of handing your child over for surgery again and again. These moments chip away at mental health and make social connections harder.
Freya’s sister, Pippa, has carried her own burden too. Though incredibly close, they call each other “best friends”, the devastation of watching her sister in pain, stepping in as carer, and living in the shadow of illness has taken its toll on her childhood as well.
Rediscovering Joy
Finding Over The Wall Camp was a turning point. During the weekend of Family Camp, the focus was not on hospitals or symptoms, but on being together as a family. We climbed, crafted, swam, laughed, and rediscovered joy. For Freya, it meant belonging, being with children who understood the endless appointments and exhaustion. She wasn’t “the ill one”; she was simply Freya.
Camp has really helped her feel less isolated, but it’s more than that – it’s given her the opportunity to have fun with other children and make friendships that she otherwise would not have had. For Pippa, camp gave her a voice and friendships with other siblings who understood.
Building Connections
Freya and Pippa were also lucky enough to attend a Health Challenge and Siblings camp – five days away with no parents! This was hard for us, as we entrusted them and the medicine regimes to the clinical team at Camp. We hadn’t realised the extent to which the focus had been so heavily on medicines, diagnoses and all the emotions that go with that.
When we were finally on our own as a couple we actually spent quality time together, being able to switch off from the responsibility and pressure that goes with having a child with chronic illnesses. This respite was invaluable and helped us enormously throughout the rest of the year.
It’s hard to explain the toll chronic illness takes on a family unless you’ve lived it. But Over The Wall Camp gave us something illness had stolen: joy, connection, and hope. Camp reminded us that childhood should be filled with laughter, not just hospital corridors and that even in the hardest moments, there is still space for fun and magic.
