Cordelia lives in Peterborough with her four children. When her family discovered first-hand how magical an Over The Wall Camp residential can be.
Living with Sickle Cell Disease
Before camp, Cordelia describes life as moving from one crisis to the next. She has four children: Ebun, Nathan, and twins Tomi and Tobi. The twins have Sickle Cell Disease and Tobi also has Juvenile Idiopathic Arthritis.
Sickle Cell Disease affects red blood cells; instead of being smooth, round, and flexible, the red blood cells become stiff and shaped like a crescent or ‘sickle’. These misshapen blood cells don’t bend or move easily, so can get stuck in blood vessels and cause blockages.
This can lead to sudden, severe episodes of pain, often called sickle cell crises. Sickle Cell crises can last from hours to days, or even several weeks. Sickle Cell Disease can lead to serious health issues, including stroke, lung and eye problems, infections, and kidney disease.
For Codelia and her family, every day was centred around trying to manage the twins’ health, hospital visits and specialist care. To reduce the risk of crises and complications, people with Sickle Cell Disease have daily medications (often including a daily antibiotic due to infection risks) and it’s vital they stay well hydrated and warm.
For Cordelia, the worrying never stopped, especially when the twins were at school and she wasn’t with them.
Tobi's admission to the Intensive Care Unit
Nathan sensed the pressure Cordelia was under, saying: ‘Mum doesn’t even live a life’. With four children, two of whom have a serious health condition, she didn’t have time for anything else. Unpredictable symptoms meant no social events or holidays because it’s impossible to plan too far ahead.
In 2021 when he was just ten years old, Tobi’s health drastically declined. In a very short space of time, Tobi developed an infection, had a stroke, and suffered a heart attack. He was intubated in the ICU for almost a week. No one knew what the impact of the stroke would be on Tobi and if he’d recover.
Thankfully, Tobi recovered and was eventually well enough to have a bone marrow transplant. But the effects of the experience stayed with the family. Every day remains a challenge as Cordelia works out how best to care for him and his sister. Life has been tough for this family, and the frequent hospital visits and unpredictability of the twins’ health means they couldn’t look forward to any respite from the stress, worry, and feelings of isolation.
Discovering Over The Wall Camp
Then, Cordelia found out about Over The Wall Camp. A couple of years after Tobi’s stroke and heart attack, the family came to an Over The Wall Camp weekend in partnership with Anthony Nolan. It was the first time the five of them could be together as a family and prioritise fun and connection, away from the daily pressures of home life.
For Cordelia, it was her first chance of respite from around-the-clock care since the twins were born. Camp helped her discover she didn’t have to struggle alone. She was overwhelmed to meet other families who understand the impact of living with Sickle Cell Disease. She spoke to others who had had a bone marrow transplant or were on the waiting list – they understood the stress of having children with long-term conditions. Suddenly, Cordelia felt less alone.
Respite for everyone
The next step for the family was for the children to come to a Health Challenge and Siblings Camp without Cordelia. “The first day without them didn’t feel real. By the second day though, it felt like the best holiday ever! It was the first time I only had to worry about myself because I knew that my children were in safe hands at camp.”
This is a luxury parents and carers of children with long term health conditions rarely get to experience. The crucial part for Cordelia was seeing the joy and happiness across all four of their faces at the end of camp. They all loved camp so much they wanted to return the following year!
Life since camp
The next step for the family was for the children to come to a Health Challenge and Siblings Camp without Cordelia. “The first day without them didn’t feel real. By the second day though, it felt like the best holiday ever! It was the first time I only had to worry about myself because I knew that my children were in safe hands at camp.”
After camp, life became fuller. Camp showed them they can have fun together – and separately – in a way that’s safe and accessible for everyone. Ebun and Nathan returned with a better understanding of the sacrifices Cordelia has made to support their family. Meeting other siblings like them enabled them to fully realise this.
As a family, they are better able to support each other in times of crisis, but they also now share more joyful moments together. The twins told us: “Camp was the best experience of our lives. We made new friends, who we still keep in touch with. We are a happier family after attending the camp”.