Ava's Story

Two-year-old Ava is an engaging little girl and full of energy. Her mum, Katie, describes her as "completely full of beans." Ava was prenatally diagnosed with Turner Syndrome, a genetic condition that can affect the heart, kidneys, and eyes, as well as puberty, fertility, and growth. She also has Dandy-Walker variant, which affects the development of the back of her cerebellum.   For Ava and her family, this has meant a life filled with hospital appointments, monitoring, and medication. Recently, Ava started growth hormone therapy which requires a daily injection – particularly difficult for a two-year-old.   Katie reflects on the challenges of managing Ava’s care: “Ava has a lot of appointments - they ebb and flow. She has five active consultants regularly involved in her care, plus a dietician, and a community occupational therapist.”   Coordinating these appointments and communicating Ava’s needs across multiple medical teams can at times feel overwhelming.   “It’s me that knows everything because someone has to,” Katie says. “You need someone who knows the whole picture because you have to be able to coordinate the care, and that has always been the bit that I have struggled with.” 

This is where Ava’s Roald Dahl Nurse, Kerry, has made a remarkable difference. As a Roald Dahl Children with Medical Complexity Nurse Specialist, Kerry’s expertise has been invaluable to holistically understanding Ava’s needs and coordinating her care.  Kerry has been especially supportive during some of Ava’s more challenging appointments.   “With Ava taking the growth hormone, she had to have some blood tests and her blood pressure taken, which was very difficult for her,” Katie explains. “Kerry liaised on all of this and even arranged for a therapy dog to be there which really helped Ava.”  She also checks in after particularly tough appointments, helping Ava’s family talk through options and ensuring they have the information they need to feel more confident in their decisions.   Kerry’s care extends to emotional support as well. Having spent so much of her young life in hospital, Ava developed a fear of medical settings. “She took Ava’s phobia seriously and supported Ava with getting play therapy. This has really helped Ava over the last six months.” Katie says. “Kerry’s been really keen to build a relationship with Ava as well, which is very important to her.”  By providing holistic and coordinated care, Kerry has been an incredible support for Ava’s family during a time of complex and changing needs.   Roald Dahl Nurses like Kerry support children like Ava every day. Their impact is vital for seriously ill children and their families. Find out how you can ensure this support continues and help establish more marvellous nurses: www.roalddahlcharity.org/donate/