What is it like to have a child with lupus?
Declan was born on 4 July 1998, the middle of three children: he was two weeks overdue, but it was a normal pregnancy and delivery. He was very unwell as a baby, needing to visit the GP or hospital weekly – it was always thought to be an ‘unknown viral infection’. At two and a half he had a red rash which the GP thought was eczema, but when it spread he was sent to see the dermatologist team who couldn’t decide what it was, so took skin biopsies which were sent to Royal Liverpool Hospital. We were sent for and he had 8-10 doctors around him: then we were called by the Alder Hey Hospital who diagnosed lupus. Declan was three. We’d never heard of lupus, so did what everyone does, go on the internet and we thought he was going to die, the web sites we found where all doom and gloom. We prepared the family for the worse and went to the Alder Hey where the learning began. Declan has C1q deficiency which may be the primary cause of his lupus; he also has immunoglobulin deficiency which is tr
