Monday - I head a team of disability-experienced nurses providing information and practical support to families. Today I am talking to health professionals about a specialist bed that we are providing for a 15-year-old girl who has just been diagnosed with an untreatable brain tumour. Her family are having a tough time of it, transforming a princess bedroom into a hospital environment. We will offer a support network to help them come to terms with their daughter's illness.
Tuesday - A sad day: we learn that a four-year-old boy who we supplied with a car seat has died. We will be keeping in close contact with the family as their younger son has the same condition. Being a friendly and understanding voice at the end of a phone is the most important part of my work. My own two children were born with minor defects and I know that to go through surgery once is traumatic enough - but many of these parents face that on a regular basis.
Wednesday - We are fast-tracking an application for equipment for an 11-month-old boy with a particularly rare condition. He needs a specialist car seat because he has no control over his bodily movements and has frequent seizures. When we speak to each family we get a feel for the other issues they are faced with: in this case, we have also arranged for him to be assessed urgently for a buggy.
Thursday - We receive donations of more than £13,000 from two businesses in Northern Ireland, which enables us to sign off the purchase of equipment for 10 children in the region. In my experience, families there struggle to get help, so it is a bonus that we can help so many children at once.
Friday - We notice that we have received a flurry of equipment grant applications from one particular city, which has highlighted concerns about the provision of specialist beds. Our campaign manager is trying to find out why this is - we sign off one of the applications immediately because it is urgent.
Newlife Foundation for Disabled Children supports children with life-limiting conditions and their families.
Karen Dobson is lead nurse with Newlife Foundation for Disabled Children