Jesy Nelson has once again laid bare the emotional reality of her life as a mum, sharing a deeply moving moment with her baby twins just days after celebrating a major turning point in her campaign for change.

The former Little Mix star, 34, posted a tender photo of her nine-month-old daughters, Ocean and Story, smiling back at her in matching outfits — their tiny bodies supported by feeding tubes and leg splints. It was a bittersweet image that captured both joy and heartbreak in a single frame.

Overwhelmed by the moment, Jesy simply wrote “My actual heart” alongside a teary emoji — a short caption that spoke volumes about the emotional weight she carries every day.

The post came shortly after a huge milestone in her fight for awareness, as the NHS confirmed it will begin screening newborn babies for spinal muscular atrophy (SMA) from October 2026. The condition — a rare and devastating muscle-wasting disease — was diagnosed in Jesy’s twins earlier this year.

For Jesy, the announcement marked more than just policy change. It was personal. She has been campaigning tirelessly for early screening, knowing firsthand how crucial early diagnosis can be.

Her daughters’ diagnosis came too late to prevent the most severe effects. Doctors have warned that children with SMA Type 1 often face a life expectancy of under two years without timely treatment, and Ocean and Story now rely on specialist equipment to breathe at night and feeding tubes to survive.

Despite this devastating prognosis, Jesy has refused to step away from the spotlight. Instead, she has chosen to keep filming her Prime Video series — determined to turn her pain into purpose.

She admitted that continuing to document their journey wasn’t easy, but said there was a reason behind it. She explained that when her daughters were diagnosed, she and her family made the decision to carry on filming, believing they needed to make the best out of an unimaginably difficult situation.

Behind the scenes, the reality is even more intense. Jesy has previously opened up about the daily medical routines her babies must endure — moments that leave her feeling like she is hurting them as they cry through treatments.

She described life as an emotional rollercoaster, saying some days feel unbearable, while others bring brief moments of light.

Speaking candidly about the condition, Jesy explained that SMA causes the muscles to weaken and waste away because the body lacks a vital gene. Without treatment, it affects everything from breathing to swallowing — and ultimately becomes life-threatening.

Still, through the heartbreak, she clings to hope. Jesy says she truly believes her daughters are strong enough to defy the odds, holding onto the possibility that treatment could give them more time — and a future no one dared promise.