Family Praises Roald Dahl Nurse’s Support Following Daughter’s Death

Ada, a young girl from Ipswich, would have celebrated her third birthday on Sunday. She passed away in September, several years after being diagnosed with a rare condition impacting the brain, spinal cord, and immune system. Her parents, Gary and Helen Brame, characterized their daughter as “wonderful” and expressed that despite their devastation, they have found peace. They recounted Ada’s experience to emphasize the “amazing support” provided by a Roald Dahl nurse during their ordeal. As Ada approached her first birthday, her parents observed concerning signs. Mrs. Brame, 34, recalled, “We organised a one-year birthday party with all the children and we actually had a joint photograph of them all together.” She noted, “All of them could sit up apart from Ada who kept falling forwards.” Mrs. Brame stated, “It really brought it home that there was something seriously wrong with our child.” She added, “We needed to do something.” Mr. Brame, 38, further explained, “From the time we first started noticing something wasn’t right, it was a year before we had a confirmed diagnosis.” Medical professionals informed the couple that Ada had Aicardi-Goutières Syndrome, and Mrs. Brame described the hospital as quickly becoming their “second home.” After a year of diverse treatments, the family met Lucy Broom, a Roald Dahl nurse at Ipswich Hospital specializing in the care of children with complex medical needs. Ms. Broom was assigned to Ada’s care, providing support to the entire family during their appointments and treatment. She noted that families frequently feel overwhelmed by the process. Ms. Broom stated, “They’ve already got so much on their plates, actually spending time with their little one is the most important thing.” She continued, “You build up really special relationships… you get to know the patient and their family and in turn that helps you meet their needs.” Approximately 150 Roald Dahl nurses provide care for around 36,000 children across the UK. These individuals are specialist senior nurses, placed in hospitals through the efforts of Roald Dahl’s Marvellous Children’s Charity. The Brame couple concurred that Ms. Broom had profoundly impacted their lives. Mr. Brame remarked, “Right from day one when Lucy came into our lives, everything changed.” He elaborated, “She was at every clinic appointment with us, so, if we had questions afterwards, rather than have to email consultants, we could call Lucy and she could either give us some more information or give us a little more understanding for some of the terms that were used.” Mrs. Brame further stated, “We know first hand what our journey was like without a Roald Dahl nurse and what our journey was like with a Roald Dahl nurse.” She concluded, “We will never be able to thank Lucy enough for what she did for us as a family.” This Sunday would have marked Ada’s third birthday, and the family is preparing for their initial Christmas without her. Mrs. Brame expressed uncertainty about how the holiday season would unfold without their daughter but confirmed they had accepted the situation. She continued, “We are, in a way, at peace with everything because we had the amazing support from Lucy, from the people at the hospital, from the hospice.” Mrs. Brame added, “Everybody was so honest with us that we got to do some incredible things with Ada that we would never have dreamed possible and she had such a fulfilled life.” She concluded, “She’s always with us.” Ms. Broom described her role as a privilege. She added, “Not every hospital has Roald Dahl specialist nurses, so the more money that the charity can bring in, the more families will have access to a Roald Dahl nurse.”