Harlow's Story

Harlow is an active four-year-old who loves princesses, jumping up and down, and making people laugh. Her mum, Holly, describes her as “resilient, very bubbly and happy.” After genetic testing a few years ago, Harlow was diagnosed with Coffin-Siris Syndrome, a rare genetic disorder. Harlow also has tracheobronchomalacia, a condition that affects her lungs and airways.  The road to diagnosis was difficult for Harlow. From birth, she was in and out of hospital, undergoing testing and investigations to understand why she was so poorly. For Holly, it felt like they were always learning something new, with the complexities of Harlow’s illness emerging all the time.  After an admission to Great Ormond Street Hospital last year, it was discovered that Harlow also had Type 3 intestinal failure caused by neuropathic pseudo-obstruction, a painful intestinal disorder that has made Harlow dependent on an IV feeding tube and in need of a stoma operation. 

In February 2025, Roald Dahl Nurse Shannon was introduced to the family: “She was an absolute angel. She was brilliant,” Holly describes.   While Harlow’s complex diagnoses felt confusing and overwhelming, Shannon helped Harlow’s family understand her conditions, ensuring that they knew what was happening to Harlow every step of the way. Holly explains: “With Harlow's condition being quite complex, we were kind of still learning and didn’t quite understand the different things that were going on. Shannon was always able to explain what they mean and would tell us what was happening.” “When we felt like nothing had really changed, Shannon would make sure she’d update us with what the doctor’s plans were and why we were waiting or what we were waiting for.”  For Harlow, Shannon also made anxious trips to the hospital a bit brighter. “She was always really, really excited to see Shannon. Every time she’d see Shannon, she was really happy” Holly explains.  Beyond supporting Harlow, Shannon also provided the space for Holly to open-up, checking-in every Friday. For Harlow and her family, having a Roald Dahl Nurse was crucial to navigating a difficult and overwhelming period of uncertainty: “We couldn’t live without Shannon. She didn’t just make a difference to our lives, but all of the lives that she’s involved in.”