Jesy Nelson has expressed her deep hope that her twin daughters, Ocean Jade and Story Monroe, will surpass their two-year life expectancy as they fight against Spinal Muscular Atrophy Type 1 (SMA1). This hereditary neuromuscular disorder leads to progressive muscle weakness and poses significant challenges for affected infants. Nelson, 34, revealed the struggles her daughters face during a recent episode of Jamie Laing’s podcast, “Great Company,” on February 4, 2024.
Describing the condition, Nelson explained, “Spinal muscular atrophy is a muscular wasting disease, so they don’t have a gene that we all have in our body.” She emphasized the critical nature of timely treatment to prevent further muscle deterioration, which can severely impact essential functions such as breathing and swallowing. Without intervention, the prognosis can be grim, with many children not surviving past their second birthday.
Despite the challenges, Nelson remains optimistic about her daughters’ resilience. She stated, “It’s not OK, but it is what it is, and I just have to accept it, and now just try and make the best out of this situation.” Throughout their journey, she has been inspired by their strength, saying, “My girls are the strongest, most resilient babies, and I really believe that they are going to defy all the odds.”
In addition to SMA1, Nelson shared that her daughters were born prematurely at 31 weeks due to twin-to-twin transfusion syndrome (TTTS), a rare condition affecting identical twins sharing a placenta. “If one baby gets more nutrients, it can adversely affect the other,” she explained. The situation can be critical, with a high mortality rate if not addressed promptly.
Reflecting on the early days following her daughters’ birth, Nelson recounted how a healthcare visit raised initial concerns when Ocean and Story displayed reduced leg movement. “A few months ago, my mum noticed that the girls were not showing as much movement in their legs as they should be,” she said in an Instagram video. Initially, she did not view this as alarming, given the guidance she received regarding the developmental milestones of premature infants.
However, further assessments revealed that the twins were struggling with feeding, leading to extensive appointments and ultimately a diagnosis of SMA Type 1. Nelson described the emotional toll of the past months, acknowledging that she had moments of despair. “Before, I would cry and feel sorry for myself,” she admitted. “Now, I don’t have a choice but to get on with it. It’s tough, but I feel blessed because my girls are literally superhuman.”
Nelson’s candid discussions about her daughters’ health challenges have resonated with many, highlighting the reality of living with serious medical conditions. Her determination and positive outlook serve as a powerful reminder of the strength that parents can draw from their children, even in the face of adversity.
