Today, Jesy Nelson has revealed the heartbreaking news of her twin daughters being diagnosed with spinal muscular atrophy (SMA), a condition that may prevent them from walking. Sadly, Jesy is not alone in facing the challenges of SMA, a disease that can be fatal within a short period if left untreated.
On May 15, Jesy, 34, and her fiancé Zion Foster, 27, welcomed their daughters Ocean Jade and Story Monroe Nelson-Foster into the world after a difficult pregnancy and an urgent medical procedure. However, their joy was overshadowed by the discovery that the babies were afflicted with SMA Type 1, a severe form of the illness that progressively weakens muscles.
Taking to Instagram, Jesy shared, “When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk. They would probably never regain their neck strength. They will be disabled. The best thing we can do right now is to get them treatment and hope for the best. Thankfully, the girls have had their treatment, which I’m so grateful for. If they didn’t have it, they would die.”
Supportive messages poured in for Jesy from Rosie and Wes, who shared their own journey of raising two children with SMA, each with different outcomes. Rosie and Wes emphasized the significance of early screening for SMA, citing their experiences with Marley and Meadow. Marley, diagnosed at five months, requires extensive care, while Meadow, tested at birth, is thriving without major health issues.
Rosie and Wes are advocating for SMA screening to be included in routine newborn blood spot tests to detect the condition early. Despite the challenges, Marley received life-changing gene therapy at 16 months, improving his quality of life significantly. However, Meadow’s timely treatment has allowed her to lead a more typical childhood.
Looking ahead, Rosie and Wes are supporting a campaign by SMA UK to expand newborn screening for SMA, as early detection can vastly impact treatment outcomes. While the National Screening Committee previously advised against routine SMA screening due to uncertainties, ongoing evaluations are being conducted to reassess this recommendation, considering advancements in medical interventions.
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