We help thousands of seriously ill children in the UK every year. Here are a few of their stories.
Finding out your child has complex epilepsy is both a shock and a huge change for the whole family. We caught up with Angus’ mum, Nicola to find out how their Roald Dahl Specialist Nurse, Pauline has supported the whole family.
Logan (7) has both VACTERL Association and a very rare, undiagnosed genetic condition. He and his family are supported by one of the charity's four Roald Dahl Rare Disease Specialist Nurses at Birmingham Children's Hospital.
It is impossible to imagine how devastating it would be to find out that your child has a brain tumour and then suffers a stroke. That is what happened to Dáire and his family. Fortunately, Dáire has an excellent team in Belfast to help him through his rehabilitation including Roald Dahl Neurodisability Specialist Nurse, Jennifer. Dáire’s mum, Kerrie explains how Jennifer and the team made Dáire’s recovery as fun as it could be and involved the whole family in his care.
Henry (4) has the incredibly rare, inherited blood condition, Diamond-Blackfan Anaemia. Since diagnosis, Henry’s parents have been on an emotional rollercoaster having to take him for blood transfusions every three weeks and then a bone marrow transplant. Henry’s Roald Dahl Specialist Nurse, Clare, has been by the family’s side throughout. We caught up with Henry’s mum, Zoe to find out more about the impact of having a seriously ill child and why having the support of a Roald Dahl Specialist Nurse is so important:
Lily (16), a keen aerial trapeze artist, was diagnosed with severe epilepsy in 2018. We caught up with her mum, Mary to find out what it’s like to be thrown into the “petrifying, unknown” world of having a child with a serious lifelong illness and how Lily’s Roald Dahl Specialist Nurse, Becs has helped with expert support, sympathy and hand-holding realism:
Imagine having to be careful when holding your child’s hand because his joints dislocate on a daily basis or having to take care when you cuddle him because he bruises so easily. Imagine having to co-ordinate appointments for the ten consultant teams he is under. This is life for 10-year-old Carter and his mum, Laura. Thankfully, they have the support of Roald Dahl Specialist Nurse, Tina who provides both practical and emotional care and helps Laura feel less isolated and alone.
Sela (15) was born with the serious, lifelong illness, Sickle Cell Anaemia and had a stroke when he was just three and a half years old. "It was a shock to our system because we didn’t know Sickle Cell could have such a drastic effect. Our Roald Dahl Nurse, Caroline is like a guardian angel who tells me how to manage Sela’s condition when I didn’t have a clue what to do with him. She has really boosted my confidence. Being a working mum with a child with a lifelong condition has been a real challenge but she has helped me through."
"Everything is a fight because Sadie doesn't have a named condition" Sadie (age 4) is a SWAN (Syndromes Without A Name) child which means she doesn’t have a diagnosis. Whilst to many people, Sadie looks like a healthy, happy four-year-old, she has a range of extremely complex health conditions. Our Roald Dahl Specialist Nurse, Anna is a huge advocate for the whole family, not just for Sadie, she just gets it."
"Having our Roald Dahl Nurse, Lesley has been life-changing for us." Cianna was diagnosed with Sickle Cell when she was just three days old. We did not find out that Cianna’s Dad was also a Sickle Cell carrier until I was in my second trimester of pregnancy meaning that Cianna had a one in four chance of having Sickle Cell Anaemia. The diagnosis did not really sink in for a very long time, and when it finally did, we felt so guilty knowing that Cianna had inherited this from us and felt responsible for her suffering.
Dominic (aged 13) is a SWAN child (Syndromes Without a Name), which means he doesn’t have an overriding diagnosis to explain the many issues that he has. He is currently on a few genetic research studies that are trying to map what each gene is responsible for.