A wave of emotion washed over Jesy Nelson as she shared heartbreaking news with her followers: her twin daughters face a future profoundly shaped by a devastating diagnosis.
Born prematurely in May, after a challenging pregnancy spent largely in the hospital, the twins have been diagnosed with Spinal Muscular Atrophy (SMA) type one – a severe muscular disease that steals strength from the body.
Jesy described SMA as the “most severe muscular disease” a baby can get, explaining how it relentlessly attacks muscles, impacting everything from limbs to breathing and swallowing. Without timely treatment, the prognosis is tragically short, with a life expectancy often not extending beyond two years.
The news came during an assessment at Great Ormond Street Hospital, where doctors delivered the painful reality: her daughters will likely never walk and will struggle to develop neck strength, resulting in lifelong disability.
Despite the overwhelming sorrow, a glimmer of hope emerged as Jesy revealed the girls have begun receiving treatment. She expressed profound gratitude for the care they are receiving, clinging to the possibility of a brighter future.
This diagnosis follows another hurdle during the pregnancy, where the twins were initially sharing a single placenta, leading to concerns about twin-to-twin transfusion syndrome. Thankfully, surgery resolved that issue, but the challenges continue.
Jesy’s vulnerability in sharing this deeply personal struggle resonates with raw honesty, offering a glimpse into the strength required to navigate such unimaginable circumstances.
Symptoms of SMA manifest differently in each individual, but can include bone and joint problems, significant muscle weakness, difficulties with movement, and challenges with essential functions like breathing and swallowing. Muscle twitching and tremors can also occur.
