Jesy Nelson Told Her Twin Babies May ‘Never Walk’
Jesy Nelson Opens Up About Her Twins’ SMA Diagnosis
Jesy Nelson, the former Little Mix singer, recently revealed a deeply personal and emotional update about her twin daughters, Ocean Jade and Story Monroe Nelson-Foster. Born prematurely in May, the twins have been diagnosed with Spinal Muscular Atrophy (SMA), a rare and severe genetic condition that affects muscle strength and movement. Jesy shared in an Instagram video that the diagnosis means her daughters may “probably never walk” and face significant physical challenges throughout their lives.
SMA is a progressive muscular disease that impacts every muscle in the body, including those responsible for breathing, swallowing, and limb movement. Jesy described it as “the most severe muscular disease,” explaining that it gradually weakens muscles and, if untreated, can severely reduce life expectancy, especially in infants diagnosed with SMA type 1.
Understanding Spinal Muscular Atrophy and Its Impact
Spinal Muscular Atrophy is a genetic disorder caused by the loss of motor neurons in the spinal cord, which leads to muscle wasting and weakness. There are several types of SMA, with type 1 being the most severe and typically diagnosed in infancy. Babies with SMA type 1 often face difficulties with basic motor functions such as sitting up, crawling, or walking. Without timely treatment, the disease can affect respiratory muscles, leading to life-threatening complications.
Jesy Nelson’s twins were assessed at Great Ormond Street Hospital in London, where doctors informed her that the girls might never regain neck strength or be able to walk independently. Despite this grim prognosis, Jesy remains hopeful and grateful for the treatments her daughters have received, which are crucial for their survival and quality of life.
Jesy Nelson’s Journey Through Diagnosis and Treatment
The past few months have been an emotional rollercoaster for Jesy and her partner, musician Zion Foster. Jesy described the experience as “the most heartbreaking time” of her life, having to act as a nurse and manage her daughters’ care, including using breathing machines to support their respiratory function.
Jesy’s openness about her family’s struggle aims to raise awareness about SMA and the importance of early diagnosis. She emphasized that early intervention can make a significant difference in outcomes for children with this condition. Treatments like Zolgensma, a gene therapy approved by the NHS, offer hope by delivering a healthy copy of the affected gene to the body. However, timing is critical because irreversible nerve damage can occur if treatment is delayed.
Currently, SMA screening is limited to families with a history of the disease, but advocacy groups like SMA UK are pushing for the condition to be included in newborn blood spot tests. This would enable earlier detection and treatment, potentially saving lives and improving long-term health for affected babies.
Raising Awareness and Supporting Families Affected by SMA
Jesy Nelson’s decision to share her daughters’ diagnosis publicly highlights the need for greater awareness and support for families dealing with SMA. The condition affects approximately 47 babies born in the UK each year, with about one in 40 people carrying the gene mutation responsible for SMA.
By speaking out, Jesy hopes to encourage other parents to seek early testing if they notice symptoms such as reduced movement or feeding difficulties in their infants. Early diagnosis can open doors to life-saving treatments and therapies that can improve muscle function and extend life expectancy.
Jesy’s story also sheds light on the emotional and physical challenges faced by families caring for children with SMA. The journey involves numerous hospital visits, specialized care, and adapting to new routines to support the child’s health and development.
Jesy Nelson’s Personal Reflections and Strength
Despite the difficulties, Jesy has expressed immense pride in her body and the strength she has found through motherhood. After giving birth prematurely at 31 weeks, she described feeling empowered and amazed by what her body accomplished. Jesy’s resilience and determination to fight alongside her daughters serve as an inspiration to many.
Her partner, Zion Foster, also shared a touching message alongside a photo of their smiling twins, emphasizing their love and positivity despite the challenges ahead. This public display of strength and hope resonates with families worldwide who face similar battles.
Conclusion
Jesy Nelson’s heartfelt revelation about her twin daughters’ SMA diagnosis brings crucial attention to a rare but devastating condition. Her courage in sharing this journey not only raises awareness but also highlights the importance of early diagnosis and treatment. If you or someone you know notices signs of muscle weakness or feeding difficulties in infants, seek medical advice promptly. Early intervention can change lives.
For more information on Spinal Muscular Atrophy and how to support affected families, visit SMA UK and consult healthcare professionals. Together, we can help children like Jesy’s twins receive the care they need to fight SMA.
Take action today—spread awareness and support research to give every child a fighting chance.
