The former Little Mix star, 35, has spoken candidly about the emotional toll of caring for one-year-old twins Ocean Jade and Story Monroe, who were both diagnosed with Spinal Muscular Atrophy (SMA) Type 1 shortly after birth.

A Difficult Update No Parent Wants to Hear

Recent hospital appointments brought more heartbreaking news for the family.

Doctors reportedly told Jesy that the twins are not responding to treatment as well as initially hoped, raising the possibility that they may need to restart intensive treatment.

The latest update comes just weeks after Jesy described feeling overwhelmed by the bittersweet victory of helping secure newborn SMA screening in England—a change that arrived too late for her own daughters.

Story has also now been diagnosed with scoliosis, a curvature of the spine that will require surgery every six months, while both girls are preparing for additional operations to repair damage to their nose and throat caused by long-term feeding tubes.

“It’s never-ending,” Jesy admitted.

The Advice That Changed Everything

Despite the constant uncertainty, Jesy revealed there is one lesson that has helped her survive her darkest moments.

She explained that she often reminds herself there are families facing even greater loss after a close friend experienced the unimaginable heartbreak of losing a child.

Thinking about that tragedy has changed the way Jesy views her own situation.

Rather than focusing only on fear and uncertainty, she tries to appreciate every day she still gets to spend with Ocean and Story.

She said reminding herself that her daughters are still with her—and still smiling—is what helps her keep moving forward when everything feels overwhelming.

A Constant Battle Between Hope and Acceptance

Jesy admitted the biggest challenge isn’t just caring for her daughters physically—it’s the emotional struggle inside her own mind.

She confessed she constantly swings between hoping her girls will defy medical expectations and trying to prepare herself for the possibility that they may not.

She worries that accepting their diagnosis could feel like giving up hope, while refusing to accept it leaves her living with constant heartbreak.

A friend offered advice that has stayed with her ever since: don’t spend today grieving a future that hasn’t happened yet, or you’ll miss the precious moments happening right now.

Jesy says she’s trying to make peace with that difficult balance, although she admits it’s a battle she faces every single day.

Music Has Become Her Therapy

Whenever life becomes too overwhelming, Jesy turns to something that has always been part of her life—music.

She revealed that the rare moments she gets alone, usually while driving, allow her to turn the volume up, clear her mind and briefly escape the constant pressure of hospital visits and medical appointments.

Those quiet moments have become one of her most important forms of therapy.

Determined to Help Other Families

Jesy’s campaign for newborn SMA screening is featured in her new Prime Video documentary, Jesy Nelson: Life Changing, which helped raise awareness of the condition and contributed to a major policy change.

From October 2026, newborn babies in England will begin receiving routine screening for SMA, allowing treatment to start before irreversible nerve damage occurs.

However, Jesy says her fight isn’t over.

She continues to campaign for screening to be introduced across the rest of the UK, hoping other families will never have to experience the uncertainty, guilt and heartbreak that she and her partner have faced.

Despite everything, Jesy says her daughters remain “the happiest babies in the world”—a reminder that even during the darkest days, there are still moments of joy worth holding onto.