A brave mum-of-two whose son was diagnosed with a rare genetic disorder at age 21 after he started to forget plans has called for early years screening for the heartbreaking disease. Vivienne Clark’s, 73, son, Scott, was diagnosed with adult-onset metachromatic leukodystrophy (MLD) just weeks before his graduation – at age just 21.
MLD is a rare hereditary disorder that causes fatty substances to build up in cells and is life-limiting. The mum-of-two noticed he kept forgetting small things like not turning up when they had planned an outing, or leaving the oven on with a meal inside and going out.
Scott, now 50, slowly declined, and Vivienne demanded Scott was referred to a neurologist. After multiple tests, including CT and MRI scans, Scott was diagnosed with MLD – and underwent two transplants from his donor brother, Russel, 53, to try and improve his condition.