‘My daughter has SMA like Jesy’s twins – being paralysed is not even worst half’
As the Mirror’s heel prick campaign for newborns continues, we meet Sophie Howes whose seven-year-old daughter Anouk was diagnosed with SMA like Jesy Nelson’s twins. She says there is no time to waste – the £5 test is a matter of life and death
Proud: seven-year-old Anouk with mum Sophie(Image: Jonathan Buckmaster)
A mum whose daughter with SMA spent four weeks in a coma after catching a cold is backing The Mirror’s heel prick campaign for newborns. Sophie Howes’ little girl Anouk, seven, was diagnosed with SMA type 2 at 18 months. She says: “We have failed the babies of 2025 by not implementing the heel prick test at birth. Now the babies of 2026 need us.
“The test costs £5 – the price of a cup of coffee you’d buy without thinking in the morning. Why aren’t parents even being offered the opportunity to buy it themselves?” A genetic neuromuscular disorder, SMA causes progressive muscle weakness, meaning affected children can sit, but usually can’t stand or walk.
READ MORE: ‘A £5 heel prick test would have saved my son from SMA like Jesy Nelson’s twins’
But Sophie, 37, a personal assistant from Salisbury, says: “People think a child not being able to walk is the worst part… but SMA mums could lose their child to a common cold.” She knows this from personal experience, after Anouk was hospitalised in October 2023.
She says: “A mild cough turned into organ failure. Her lungs were full of fluid and she had a very serious case of pneumonia due to microplasma.” In a coma in ICU for four weeks, she was intubated and placed on a ventilator. Sophie says: “I was on a knife edge. She was at school one minute and the next we thought we might have to say goodbye.
“It’s a muscle wasting disease and there are so many muscles in the body that SMA affects. Rather than just the ability to walk, it affects your ability to breathe, to swallow.” Sophie, who also has a son Willem, three, with husband Mike, 39, an entrepreneur, adds: “Every second counts with SMA.
“Once muscle is lost it’s gone forever. Treatment stops the muscles wasting, saves lives and is the difference between a child walking and being in a wheelchair. Breathing easily, and not. The fact that these children have been so let down is devastating.”
When Anouk was born in 2018 she met her milestones. But when she started walking at a year old, Sophie noticed her swinging her legs. At first, doctors thought the problem was hip dysplasia, but in October 2019, tests revealed Anouk had SMA type 2. Former Little Mix star Jesy Nelson’s twins, Ocean and Story, have type 1.
After Anouk’s diagnosis, Sophie launched a charity, Ace SMA, pushing for muscle strengthening physiotherapy to be available for children with SMA.
“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, you probably should move to a bungalow, you are going to need a hoist’.
“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. Everyone’s minds are slowly changing about what children with SMA can do. And treatment, bolstered by physio to strengthen the muscles, is key. When Anouk was born, we were told that she probably wouldn’t live past the age of 14. And now thankfully, with treatment and physio, we’re hopeful that she’s going to live a very full, healthy life.
She says: “We take every day as it comes. There is no crystal ball, but I’m hoping Anouk maintains her strength. She can walk around the house, although she does use a wheelchair for longer distances.
“Anouk wasn’t able to be treated earlier, because it just wasn’t possible. [The first SMA drug was approved for use on the NHS in 2019]. If Anouk had been born in 2026, her outcome could be so different., especially if there’d been a heel prick test for newborns”
Sharing a message of hope for Jesy, she adds: “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. And we’re thankful too, to the Mirror.”
READ MORE: ‘I’ll never get over brother’s death and it’s OK – we must stop pretending no one dies’
