The fight for SMA screening gains momentum after Jesy Nelson's campaign, but many families feel their voices have been ignored for years. SMA, a rare genetic condition causing muscle wastage, has been a silent struggle for many, with some families feeling their calls for government action have fallen on deaf ears. Portia Thorman, whose son Ezra has SMA1, has been advocating for newborn screening for years, writing letters to the health secretary, Wes Streeting, who has acknowledged the issue but has yet to take action. The campaign has been painful, with families feeling brushed aside by politicians. Amy Moffatt, whose son Oakley was diagnosed with SMA1 at 10 weeks, had to fight to have her son's symptoms taken seriously, and now faces the financial burden of his full-time care. The media narrative around SMA has been negative, focusing on the downsides, but many with the condition have gone on to live full lives. The spotlight on SMA after Jesy Nelson's campaign has been bittersweet, with some families feeling it's a shame it took a celebrity to get it into the media. The Department of Health and Social Care has acknowledged the campaign and is working on a large-scale study into newborn screening, but many families feel their voices have been ignored for too long.
