Joaquin's Story

Joaquin is a strong and determined little boy but at just a year old, he has faced significant challenges to his health. Two days after he was born, Joaquin was transferred to hospital with a suspected bowel obstruction. He was later diagnosed with Hirschsprung Disease, a rare condition that affects the bowels and can cause chronic constipation and intestinal blockages. At thirteen days old, Joaquin had an ileostomy and following three weeks of persistent undiagnosed respiratory distress, he was once again transferred from his local hospital back to London. Joaquin has spent a total of 11 months in hospital.  Over time, Joaquin’s condition has deteriorated. Although he received an initial diagnosis, doctors later found that the inflammation affecting him was systemic, impacting his lungs, gut, and skin. As a result, Joaquin requires breathing support and multiple medical teams to manage his condition. At his most critical moment, he suffered an acute respiratory distress leading to cardiac arrest and had to be resuscitated three times.  This prolonged period of hospitalisation has taken an immense toll on Joaquin’s family. Alongside constant worry and uncertainty, Joaquin’s 7-year-old brother has had to split his education between Kent, where the family live, and the Evelina which provides sibling schooling. This is just one of the many adjustments the family has had to make over the past 11 months. Meeting their Roald Dahl Nurse In November 2025, the family were introduced to Molly, a Roald Dahl Nurse Specialist. As Joaquin’s condition grew more complex, his care began to span multiple departments and specialists, making coordination more difficult. For Joaquin’s parents, Rona and Angelo, this has been incredibly challenging, but Molly has been there to relieve some of this burden. “Molly looks at Joaquin from head to toe and provides great direction as to where the care is going” they say. “If something needs following up, Molly is really good at chasing that.”  The consistency of care Molly provides has been especially important. “It helps validate our concerns,” Rona and Angelo say. “If we feel like something has changed from the week before, the nurse looking after Joaquin might not know that because they weren’t with Joaquin the week before. Molly would know because she sees Joaquin regularly.” 

While Joaquin’s journey has been difficult, the family are hopeful that brighter days lie ahead. Following a successful home visit trial over Easter, Joaquin was finally discharged home by the end of April. However, preparing for this transition came with its own challenges, particularly around the administrative coordination required to get Joaquin home. “If Molly wasn’t there, there would be a lot of admin to think about,” Rona and Angelo explain. “If we raise something with Molly that needs looking at, she’s very good at following it up and making sure it gets resolved.” Beyond care coordination, Molly has provided vital emotional support. Over the past 11 months, the family have faced immense emotional strain, but Molly’s compassion has been a constant comfort during this time. “The emotional support that Molly gives us is really great because she doesn’t just ask how Joaquin is doing, she asks how we are doing as a family, or what else she can do for us as a family,” Joaquin’s parents say. “Roald Dahl Nurses are making such a big difference, not just in the patient's life and their medical journey, but also to the families of those patients.” For Joaquin and his family, it is hard to imagine the past year without a Roald Dahl Nurse. Reflecting on what Molly means to them, they say: “Without that holistic care, it's hard to see through this journey. It's a difficult journey for everyone. With Molly, it becomes a little less difficult. So, to all those who are donating and to the charity, a very big thank you to them and I hope this support continues.” Find out how you can help ensure this vital support continues for children like Joaquin and help establish more marvellous nurses: www.roalddahlcharity.org/donate/