South Wales Argus
·Jul 2026
Mum fighting to raise £1.5 million for son's life-saving treatment
A mother from Swansea is urgently trying to raise £1.5 million to fund gene therapy in the United States for her five-year-old son, who has Sanfilippo syndrome, a rare degenerative condition. After a prolonged diagnostic struggle within the NHS, she is seeking treatment abroad that could halt the disease’s progression, though costs may rise as high as £3 million. She highlights the rapid decline the condition causes and the limited treatment options available in the UK, describing the situation as a race against time.