Get involved Bristol to Paris Cycle Challenge Patient Stories: Noah 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 Noah. At just one year old, Noah is a regular patient at Bristol Royal Hospital for Children with a condition that affects just one in a million people worldwide. Baby Noah visits the hospital six days a week with his parents Beccy and Garth and his half-siblings Coel, eight, and Lorelei, six. Left untreated, Noah’s condition would slowly calcify his organs. He has primary hyperoxaluria type one, which means his liver is missing one enzyme and so produces crystals called calcium oxalate. Noah’s mum Beccy said: “Noah was diagnosed with the condition when he was 11 weeks old. He had no symptoms, but I had a gut feeling something wasn’t right. After a trip to North Wales visiting family, Noah was vomiting blood so we rushed to Bristol children’s hospital. They did some blood tests and when they came back they said it was really bad news. It was awful. I knew something was wrong, but I didn’t think he would be dying. Noah’s condition is so rare they couldn’t diagnose it for three weeks. His blood samples were sent all over the country as they tried to piece it together. Garth and I are both carriers of the gene but it’s dormant in us. Noah had a one in four chance of getting the condition with the ‘bad’ gene from both of us, and it would be same if we had any more children. This is only the second patient Bristol have seen with this condition in 26 years. Noah had a liver transplant in June this year at Birmingham Children’s Hospital and we’re waiting for him to be big and strong enough for a kidney transplant. We spend most of our time in hospital but once a week Noah goes to music class which he loves! On our day off he likes to go to the zoo or the aquarium or play in the park. Coel and Lorelei enjoy coming to Bristol children’s hospital too. Coel likes to play on the Xbox in the teenage room and Lorelei loves playing in the play room. So much thought and care is put into everything. For example we all received Christmas presents and Easter eggs, which is thanks to the charity. It’s hard coming into hospital six days a week. It’s not what you think will happen when you have a baby, but the care and treatment we have received is second to none. The staff on the Lighthouse Ward have become our family and our little boy would not be here without them. Your support of Bristol city centre hospitals will help them deliver the best care to patients like our little Noah. Thank you.” Register to take part in the fifth anniversary of the Bristol to Paris Cycle Challenge.