A mother whose seven-year-old daughter spent four weeks in a coma after catching a common cold is urgently backing The Mirror's campaign for a simple £5 heel prick test for all newborns. Sophie Howes' daughter Anouk was diagnosed with Spinal Muscular Atrophy (SMA) type 2 at 18 months old, and she believes early detection could have dramatically altered her child's prognosis.
The Devastating Reality of SMA
Spinal Muscular Atrophy is a genetic neuromuscular disorder that causes progressive muscle weakness. While many assume paralysis is the worst outcome, Sophie reveals the condition's true danger lies elsewhere. "People think a child not being able to walk is the worst part," says the 37-year-old personal assistant from Salisbury, "but SMA mums could lose their child to a common cold."
A Mother's Nightmare Experience
Sophie speaks from harrowing personal experience. In October 2023, what began as a mild cough for Anouk rapidly escalated into organ failure. "Her lungs were full of fluid and she had a very serious case of pneumonia due to microplasma," Sophie recalls. Anouk was placed in a medically induced coma in intensive care for four weeks, requiring intubation and ventilator support.
"I was on a knife edge," Sophie describes the traumatic period. "She was at school one minute and the next we thought we might have to say goodbye." This experience underscores why she believes the £5 test - comparable to the price of a morning coffee - represents a crucial opportunity for parents.
Why Early Detection Matters
SMA affects numerous muscles throughout the body, compromising vital functions beyond mobility. "Rather than just the ability to walk, it affects your ability to breathe, to swallow," Sophie explains. The progressive nature of the disease means that once muscle is lost, it's gone forever, making early intervention critical.
When Anouk was born in 2018, she initially met developmental milestones and began walking at one year old. However, Sophie noticed her daughter swinging her legs unusually. After initial suspicions of hip dysplasia, tests in October 2019 confirmed SMA type 2 - the same condition affecting former Little Mix star Jesy Nelson's twins, though they have the more severe type 1 variant.
Transforming Prognoses Through Treatment
Following Anouk's diagnosis, Sophie and her husband Mike, 39, launched the charity Ace SMA to advocate for muscle-strengthening physiotherapy for affected children. Their approach challenges traditional assumptions about SMA limitations.
"When Anouk was diagnosed we were told, 'You're going to have to adapt your house, you're going to have to put in a stair lift, your daughter probably has to sleep downstairs,'" Sophie recalls. "Mike and I thought, what if we can work really hard, and she can work really hard - maybe we don't need to have all that."
Their determination has yielded remarkable results. "When Anouk was born, we were told that she probably wouldn't live past the age of 14," Sophie reveals. "And now thankfully, with treatment and physio, we're hopeful that she's going to live a very full, healthy life."
A Message of Hope and Urgency
Anouk currently walks around their home independently, using a wheelchair only for longer distances. Sophie acknowledges the uncertainty that comes with SMA but maintains cautious optimism. "We take every day as it comes. There is no crystal ball, but I'm hoping Anouk maintains her strength."
The timing of treatment availability has been crucial. The first SMA drug received NHS approval in 2019 - the same year Anouk was diagnosed. "If Anouk had been born in 2026, her outcome could be so different, especially if there'd been a heel prick test for newborns," Sophie emphasizes.
Addressing Jesy Nelson directly, Sophie shares: "An SMA diagnosis is terrifying. But now I look at Anouk and she's happy, bubbly. It's been scary but wonderful too. Jesy is doing an amazing job spreading the message and the whole SMA community is behind her."
Sophie's final plea underscores the campaign's urgency: "We have failed the babies of 2025 by not implementing the heel prick test at birth. Now the babies of 2026 need us." She questions why parents aren't even offered the opportunity to purchase the £5 test themselves, framing it as a straightforward choice between proactive prevention and potential tragedy.
