It quickly became apparent that she was going to require urgent treatment...

Our daughter Savannah was born in our local hospital James Cook Hospital in Middlesbrough with a liver disease called biliary atresia on 7 September 2010. This is a blockage in the tubes that carry bile from the liver to the gallbladder. It quickly became apparent that she was going to require urgent treatment and on the 21 October at just six weeks old she was transferred to Leeds General Infirmary where she had to endure a long operation called Kasai Procedure to surgically bypass her blocked liver ducts to prevent liver damage. The girl’s father, Dale, myself moved down from our home in Middlesbrough to Leeds. It was here that we had the support of The Sick Children’s Trust’s Eckersley House which became our ‘Home from Home’ for the next 16 of days. The recovery time for this was six weeks, during which time she was on special milk and different medicines throughout the day as well as regular check ups with the doctors. During our time in the house Savannah has had to have lots of different tests and scans and four blood transfusions whilst the doctors decided on the best course of treatment for her. It was wonderful to have a place to call our home throughout this time. Eckersley House provided a sanctuary for me and the rest of my family and meant that we could focus all our attention on Savannah and willing her to get better. Our home in Middlesbrough is over two hours away so if we’d have to have travelled in every day it would have put a huge strain on us both financially and emotionally. After Savannah had recovered enough to come back home we headed back to Middlesbrough. But just as we thought we were beginning to see a light at the end of our tunnel, Savannah then got cholangitis every couple of weeks, an infection in the liver which requires urgent treatment with antibiotics, and we were back in and out of James Cook hospital. This was a situation we became very familiar with over the next two years. We moved to Scotland in August 2011 and continued Savannah’s treatment at Yorkhill Children’s Hospital there. We really didn’t think the situation could get any worse but then in August 2012 we noticed that Savannah had a lot of blood in her stools which we later found out was ‘portal hypertension’ – high blood pressure in the portal veins which is the main vein carrying blood from the gut to the liver. We were terrified. The doctors told us that the portal hypertension caused veins like varicose veins to develop in the lining of the gullet, stomach or gut. These veins become fragile and bleed. Just the thought of our little girl suffering like this was overwhelming. The doctors initially tried to treat her at Yorkhill hospital but when she deteriorated decided we had to move her back to Leeds General Infirmary. In September 2012 we were told that Savannah would need a major liver operation to put a stent in at Leeds. Once again we called on the support of The Sick Children’s Trust, where we stayed for nearly a month from 7 September 2012. This time round though we had our four month old daughter Paris, also with us, so it was even more important for us to have the support of the charity and somewhere the whole family could stay. We were so nervous about the outcome of the operation as doctors told me they have never performed this operation to someone as young as Savannah but being in the familiar surroundings of Eckersley House and knowing we were literally just moments away across the road from her ward helped us no end. At the moment we don’t know the outcome of the stent operation. We are just hoping for the best. We have to go back to Leeds for the results in November but we know that ultimately Savannah will need a liver transplant and that is the reality of what we have to face but she is a brave little girl and we know we’ll get through it together. We would like to thank The Sick Children’s Trust and Eckersley House as if it wasn’t for them we wouldn’t have been able to be by Savannah’s side through all of this. Adelle Rennard, Savannah’s mum