A Message from Jen, Ted, Tigerlily xxx

I’m sorry I haven’t written sooner, I have wanted to but haven’t been able to find the space to focus on anything really other than Sassi. We’ve been living a nightmare. The version of this update we had in our minds for the longest time and so desperately believed in was of a full recovery. Sassi the unicorn. After giving it time, and everything we had, it was then looking more like a long recovery, into a new normal. Which we accepted graciously that we would be getting home, eventually, and had began preparing for. Sassi where she belongs. And then there’s this one. The reality we’ve found ourselves in. We’ve lost our darling girl. For 6 weeks Sassi was in ICU, being treated for something called HUS - Hemolytic uremic syndrome. A rare and severe condition that damages small blood vessels. Although she never displayed all of the typical pathological signs of HUS (we think that’s just because she was super strong), it does explain the resulting kidney failure and brain injury. The syndrome was likely caused by a bacterial infection, possibly contracted from a farm where she held, rode and petted animals. She also tested positive for RSV and parainfluenza in the days after admission, although you wouldn’t have known as she had only an occasional cough. There are no official treatments as such for HUS. The treatment is about supporting the body, and time. Sassi was strong. Surprising many at each corner. She was courageous and a fighter. She fought so hard. We all fought SO hard. It’s difficult to find words to express the depths of darkness and what has occurred over the last 7 weeks. The unknowns. The uncertainty. The turbulence. Fear. So many tears. Can you run out of tears? One step forward two steps back. The rollercoaster you’re on but so desperately want to get off. All you can do is grip on for dear life. The torture as a parent of not being able to console your own child, not through lack of trying anything and everything you possibly can but because they are truly inconsolable. The not knowing if your child will ever talk, smile, walk, run, play, or recognise you again. Live or die. It’s also difficult to express the gratitude we feel for the support you have shown us. Your generosity has been unbelievable. Seeing your names pop up, knowing we’ve been in your thoughts has really bouyed us in some challenging moments. I cry every time seeing a new name appear. It has made a difference in the darkest of times. Support we didn’t know we deserved. We will be eternally grateful. Thank you, thank you, thank you, thank you. We will never be able to thank you enough. Your generosity has allowed us to spend every second at Sassi’s side. It helped us keep her comfortable. It will help honour her. During our time in hospital the girls Yoto (music and story) player has been an invaluable tool. The nurses and staff commented several times on what a wonderful resource it is, so we have made a Yoto package donation to the ICU ward so that other families can benefit too - providing comfort, distraction, and a little bit of joy through incredible difficult days and nights. We particularly hope the make your own cards (where you can record yourself and others reading or singing) will be useful for families who cannot always be with their children. There’s a few messages we’d love to share, along with our infinite thanks; Please donate blood if you’re in a position to do so. This is a lifeline for many critically ill people Young children can seem an ordinarily unwell and then deteriorate very quickly, including from commonplace symptoms like dehydration, respiratory distress, and gastro. If something doesn’t seem right or feel right, seek help. Push for answers. Seek a second opinion Hand hygiene is important. Carry hand sanitiser Wash your fruit and veg And most importantly : Love like Sassi loved; walking up to us with an “I love you” and cuddle (especially to her best friend - her sister, Tigerlily), at random, frequently. We’re the most fortunate we got to experience her magic Jen, Ted, Tigerlily xxx