A young man who was told he would not survive childhood has issued a powerful plea to the government and former Little Mix star Jesy Nelson, urging them to back a life-changing 36p NHS test.
Defying a childhood death sentence
Maxwell McKnight, a 21-year-old from St Neots, Cambridgeshire, was diagnosed with spinal muscular atrophy (SMA) at the age of two. The muscle-wasting condition is the same one affecting the twins of ex-Little Mix singer Jesy Nelson. His parents, Joanne and Paul, now both 53, were given the devastating prognosis that he would die in childhood.
Today, Maxwell is not only thriving but excelling. He is on track to achieve a first-class honours degree in business management. In 2024, he made history by becoming the first wheelchair user to climb Mount Snowdon, raising an impressive £50,000 for the charity SMA UK.
The 36p test that could save thousands
Maxwell is now a leading voice in the campaign to have SMA added to the standard NHS newborn heel prick test. He passionately argues that early diagnosis is critical. "The sooner you can get treatment, the more muscle you can save, the better the outcome for the child," he states.
He highlights the shocking cost disparity: while living with SMA involves enormous expenses like £20,000 wheelchairs and £100,000 house adaptations, the screening itself can cost as little as 36p per child when bought in bulk. "Adding SMA screening to the heel prick test has the power to completely change the lives of children being born now," Maxwell insists.
A life of achievement and advocacy
Maxwell's daily life involves significant challenges. He requires 24/7 care, uses a sleeping machine to aid his breathing at night, and has two dislocated hips. Despite this, his mindset is one of determination. "Being disabled takes more planning, but I can do anything that an able-bodied person can do," he says.
He credits his family for their unwavering support. His mother was his primary carer until he turned 18, and his sister Yasmin, 19, has been his "rock". He is also a trustee of the charity Caudwell Children.
In a heartfelt video message to Jesy Nelson, Maxwell offered hope. "I promise there is light at the end of the tunnel... a hard life isn't necessarily a bad life. Living with a disability is all about mindset," he said, listing his own achievements including driving, being a board member, and being in a long-term relationship with his girlfriend Daisy Hall.
Looking ahead, Maxwell has ambitious goals from accessible skiing to becoming a CEO, all while continuing to fight for the simple, affordable test that could prevent others from facing the same steep road he has travelled.
