Jesy Nelson's twins battle rare SMA Type 1 after premature birth

Jesy Nelson's twin daughters, Ocean Jade and Story Monroe, are facing a rare and serious health battle. The nine-month-old girls were diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a condition that causes progressive muscle weakness. Born prematurely after a high-risk pregnancy, the twins are now undergoing treatment for a disorder that, if left untreated, can be fatal before the age of two.

Nelson and her partner, Zion Foster, welcomed their daughters in May 2025 after a complicated pregnancy. The twins developed twin-to-twin transfusion syndrome (TTTS), a rare but dangerous condition affecting identical twins. Due to the severity of TTTS, the girls were born at just 31 weeks.

The first signs of SMA Type 1 appeared when Nelson's mother noticed the babies struggled to move their legs. Confirming the diagnosis took months of medical tests and appointments. SMA Type 1 is a hereditary disorder that weakens muscles over time, often leading to severe complications without intervention.

In recent years, medical advances have transformed SMA Type 1 treatment. Therapies like Zolgensma (gene therapy), Evrysdi (oral medication), and Spinraza (injected treatment) have drastically improved survival rates. Before 2016, most children with the condition did not live past two years. Now, over 90% reach age five or older, with many achieving motor milestones like sitting or standing.

Despite the challenges, Nelson has spoken about her daughters' strength and happiness. Their resilience has given her hope as they continue to fight the disease.

Ocean Jade and Story Monroe are receiving the latest treatments available for SMA Type 1. While the condition remains serious, medical progress has offered new possibilities for children like them. Nelson remains focused on supporting her daughters through their ongoing care and development.