Former Little Mix singer Jesy Nelson has shared heartbreaking news about her newborn twin daughters, revealing they have been diagnosed with a severe and life-changing genetic condition.
What is Spinal Muscular Atrophy Type 1?
In an emotional social media video posted on Sunday, the 34-year-old pop star explained that her babies, Ocean Jade and Story Monroe Nelson-Foster, have spinal muscular atrophy type 1 (SMA1). The twins were born in May to Jesy and her musician fiancé, 27-year-old Zion Foster.
SMA is a rare neuromuscular disorder that affects the nerve cells controlling voluntary muscle movement. Type 1, also known as Werdnig-Hoffmann disease, is the most severe form and typically appears in infants under six months old. The condition is inherited when both parents carry a faulty gene, often unknowingly.
The disease causes progressive muscle weakness, impacting crucial functions like breathing, swallowing, and head control. Jesy, fighting back tears, told her followers: "I am grieving a life I thought I was going to have with my children." She has been told her daughters may never walk or regain strength in their necks.
The Crucial Early Warning Signs
Medical professionals stress that early detection of SMA1 can be transformative, especially with new treatments now available. However, the initial symptoms can be subtle and are sometimes mistaken for general developmental delays.
Clinicians list several potential early indicators that parents and caregivers should be aware of:
- Floppiness or low muscle tone: Babies may feel unusually limp when held.
- Difficulty holding up the head.
- Weak or reduced movement in the arms and legs.
- Shallow breathing or using the stomach muscles to breathe.
- Trouble with feeding or swallowing.
- A weak cry.
Often, infants with SMA1 do not meet expected motor milestones, such as rolling over or pushing up during tummy time.
Jesy Nelson's Journey to a Diagnosis
Jesy detailed her family's path to discovering the twins' condition. Her mother first noticed that the girls were not moving their legs as much as expected. Initially, Jesy was not overly concerned, as healthcare visitors had advised her that premature babies, which her twins were, develop at their own pace.
"From the minute I left NICU I was told, 'Your babies are premature so don’t compare your babies to other babies,'" she recalled. However, when the twins later began struggling to feed properly, Jesy sought further answers despite being told repeatedly that everything was fine.
Her persistence led to the eventual diagnosis of SMA Type 1. The singer has now taken on a nursing role for her daughters overnight, adapting to their complex needs.
While there is currently no cure for SMA, treatments and support systems exist to help manage the condition and improve quality of life. Jesy's partner, Zion Foster, has said the girls are "smiling through the challenges," offering a note of hope amidst the difficulty.
Jesy's decision to share her family's story publicly aims to raise awareness about this rare disease, emphasising the importance of trusting parental instincts and seeking medical advice if developmental concerns arise.
