Jesy Nelson’s Twin Daughters Face Possible Lifelong Walking Challenge

Jesy Nelson, the former member of Little Mix, recently opened up about her twin daughters’ health struggles. The singer revealed that Ocean Jade and Story Monroe Nelson-Foster have been diagnosed with Spinal Muscular Atrophy (SMA), a severe genetic condition that inhibits mobility.

Diagnosis and Condition

Nelson’s daughters were born prematurely at 31 weeks in May 2022. They have shown significant challenges related to movement and feeding. After consulting specialists and enduring numerous medical appointments, the diagnosis of SMA Type 1 was confirmed. This progressive condition affects all muscle functions, including those essential for breathing and swallowing.

Impact of Spinal Muscular Atrophy

• The condition may prevent the twins from ever walking.
• It can impact every muscle in the body, making daily activities extremely challenging.
• Without timely treatment, life expectancy may be less than two years.

Nelson shared her experience from Great Ormond Street Hospital in London, where specialists informed her of the severe implications of SMA for her daughters. She described the past few months as the most heartbreaking of her life, yet she maintains a hopeful outlook, believing her daughters can overcome the odds with the right support.

Treatment and Future Outlook

After diagnosis, both girls have started receiving treatment. In expressing gratitude for the care they have started, Nelson emphasized the importance of early intervention. For SMA, the life-saving gene therapy drug Zolgensma was approved by the NHS in 2021. This treatment delivers a healthy copy of the affected gene, crucial in preventing irreversible damage.

Raising Awareness

In addition to focusing on her daughters’ health, Nelson is committed to raising awareness about SMA. She aims to facilitate quicker diagnoses for other children facing similar challenges. Currently, SMA screening is available only for infants with a family history of the condition.

The Importance of Screening

According to SMA UK, the need for expanded testing is critical. The organization advocates for SMA to be included in the standard blood spot test for newborns, which currently screens for ten serious conditions. In 2024, it is estimated that around 47 babies in the UK will be born with SMA, highlighting the necessity for broader screening options.

As Jesy Nelson navigates this difficult journey, her efforts to raise awareness may encourage improved screening practices for SMA, potentially changing the course of the disease for future generations.