Get involved Bristol to Paris Cycle Challenge Patient Stories: Rosie Your support can make a real difference by making the hospitals more comfortable for poorly patients and their loved ones, providing world-class equipment, funding innovative research and supporting staff training and development. By taking part in the Bristol to Paris Cycle Challenge 2019 you can help deliver the best care to patients like baby Rosie. 15-month-old Rosie Butler is a regular patient at Bristol Royal Hospital for Children. She visits with her mum Hannah, dad Luke and three-year-old brother Henry as she has a collection of symptoms including congenital nephrotic syndrome, which causes kidney failure. Her condition is caused by an extremely rare genetic mutation in the WT1 gene, the Wilms tumour suppressor gene Rosie’s mum Hannah said: “My whole life revolves around Rosie and Bristol Royal Hospital for Children. Five days a week, I spend up to six hours travelling to and from the hospital from our home in North Devon so that Rosie can have her treatment. Our beautiful baby girl was born prematurely at 35 weeks and six days. We took her home for just four days before I returned to hospital in Devon with a retained placenta. I went into theatre for two hours and by the time I came out I had a very poorly baby. In the time I was gone, Rosie had had numerous blood tests revealing a severe problem with her kidneys. I had known something wasn’t right – she looked a bit grey and she wasn’t feeding - but it still came as a huge shock. We came to Bristol children’s hospital, which is a renal specialist hospital, and didn’t leave for five months. Rosie was born in end stage renal failure and needed intensive treatment. At just 10 weeks old Rosie had to have both her kidneys removed or we would have lost her. She’s had ten surgeries, four catheter tubes, a two week stay in PICU for hemofiltration, heart scans and blood transfusions. All in her 15 month life. On the Lighthouse Ward we get to know other parents and their children and build relationships, but it’s hard to see other families and what they are going through as well. The team on the ward is small so we feel lucky that we know them all very well and they know Rosie and Henry too. Once Rosie is big enough, we will start looking for a match for a kidney transplant. She needs to be 10 kilograms and at the moment she’s six, but we need to make sure she’s strong enough too. Rosie is such a happy baby. What’s hard about a renal condition is that to look at her you would think she is a healthy baby, but this a lifelong condition. For a long time we felt like Bristol children’s hospital was home and the staff are like family to us. Your support of Bristol city centre hospitals will help them deliver the best care to patients like our gorgeous little Rosie. Thank you.” Register to take part in the fifth anniversary of the Bristol to Paris Cycle Challenge.