The young people's officer and support team leader at Children's Liver Disease Foundation recounts her week
Monday: We're a busy team and Monday mornings are our time to share news and ideas. I report back on the family picnic we hosted on Saturday. All the families enjoyed meeting others affected by children's liver disease and sharing experiences. Most importantly, everyone had fun and we even dodged the rain.
Tuesday: The day starts with a planning meeting for our events programme. I spend the next hour phoning bowling alleys, church halls and play specialists around the country to check availability. In the afternoon, I take a call from a worried young girl who has just been told she needs a liver transplant. I chat to her, send her some information and tell her about our young people's website.
Wednesday: I'm at King's College Hospital in London today attending a clinic for young people who are about to transfer to adult services. Thirty years ago, being born with a liver disease meant that you were unlikely to survive into adulthood. Now, thanks to medical developments, more of these children are surviving. After the clinic I do a brief presentation to ward staff. They tell us how useful it is to be able to give our information to families who have received the shattering diagnosis of liver disease in their children.
Thursday: It's back to the office and more calls. One is from a lady whose granddaughter has just been diagnosed with liver disease. She is keen on the idea of fundraising for us so I put her in touch with our fundraising manager. I make sure I leave on time for my boot camp fitness session. Hearing so many difficult personal stories is a large part of my job, but running around and getting covered in mud certainly helps to relieve some of the stress.
Friday: We're taking 16 young people with liver disease to an outdoor activity centre in three weeks' time. I spend most of the day checking with the venue and our young people that we're all good to go. These trips are exhausting but really rewarding.
The Children's Liver Disease Foundation provides information and support to those affected by the condition and funds research
Laura Varma is young people's officer and support team leader at Children's Liver Disease Foundation