Jesy Nelson, the former Little Mix singer, recently shared that her twin daughters, Ocean Jade and Story Monroe, are facing a tough battle. Both were born premature and have been diagnosed with spinal muscular atrophy type 1 (SMA1), a rare genetic condition that affects muscle strength and movement.
In a heartfelt Instagram video, Nelson explained how doctors indicated her daughters might never walk or even regain their neck strength. She emphasized the critical need for immediate treatment, expressing gratitude that her girls have already begun receiving necessary care. “If they don’t get treatment, the risks are serious,” she said.
The twins’ diagnosis came after numerous hospital visits lasting over four months, during which medical professionals monitored their development. Nelson wants to raise awareness about SMA1, stressing that early intervention is vital. She noted the signs parents should look for, which include limited movement, “floppiness,” and changes in breathing patterns.
SMA1 is the most severe form of spinal muscular atrophy. Sadly, in the UK, around 70 children are diagnosed each year, and without treatment, fewer than 10% of affected infants live past age two. The charity SMA UK highlights the importance of early detection, advocating for inclusion in newborn screening tests. Currently, the NHS doesn’t test for SMA1 during routine checks conducted shortly after birth.
New treatments, including gene therapy, have improved outcomes for many SMA patients. These innovations have been available through the NHS since 2019, and they significantly change the health prospects for babies diagnosed before symptoms appear. For instance, NHS Scotland recently added SMA to its newborn screening program as part of a pilot initiative that could enhance early diagnoses.
Reflecting on her journey, Nelson mentioned that her mother first noticed something was amiss when the twins weren’t moving their legs as expected. Initial assessments led to a belief that their development was just delayed due to being born early. However, after a deeper evaluation, the diagnosis of SMA1 changed everything for their family.
“The last few months have been incredibly challenging,” Nelson shared. She spoke of feeling like she was grieving the life she envisioned for her children. Yet, she remains hopeful. “I believe my girls will defy the odds,” she said, determined to focus on the positives and the help available to them.
Many parents resonate with her story, particularly in light of the growing online community supporting families affected by rare conditions. Social media buzz around SMA advocacy continues to grow, showcasing shared experiences and resources that inspire hope and increase awareness.
For more information about SMA, you can visit the SMA UK website or learn about the latest advancements in treatment on NHS resources.
