The torment that six-year-old Dáithí MacGabhann and his family are going through is incredibly uncomfortable to see.
We are used to them being so full of hope and positivity. They have already achieved so much, helping to unite Stormont parties in support of new laws in a bid to boost organ donation.
But one year on, with the collapse of devolution stalling indefinitely the implementation of the life-saving legislation, they look deflated.
