Former Little Mix star Jesy Nelson has shared the devastating news that her twin baby daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with a rare genetic condition that will likely prevent them from walking. The girls, who were born prematurely last May with their father, musician Zion Foster, have been diagnosed with Spinal Muscular Atrophy (SMA), described by Nelson as the "most severe muscular disease."
In an emotional Instagram video, Nelson explained that the girls' condition affects every muscle in their bodies, including their legs, arms, breathing, and swallowing. She revealed that they had been struggling with movement in their legs and feeding difficulties, leading to a series of appointments and assessments at Great Ormond Street Hospital in London.
After a grueling three to four months, the girls were finally diagnosed with SMA type 1, a severe muscular disease that gradually weakens and kills muscles in the body. If not treated in time, the life expectancy for babies with this condition is not expected to exceed the age of two.
Nelson said that her daughters' prognosis is not hopeful, as they are "probably never going to be able to walk and will not regain their neck strength, resulting in disability." However, she expressed gratitude for the treatment they have received, noting that it is crucial for their survival.
The singer said that she has had to act as a nurse for her daughters and put them on "breathing machines" since their diagnosis. She described the past three months as the "most heartbreaking time of her life" and felt like her whole world had turned upside down.
Despite the challenges ahead, Nelson believes that her daughters will "defy all the odds" and fight this disease with the right help. She shared her story in hopes of helping other children get diagnosed as soon as possible.
Foster posted a smiling photo of the twins with the caption, "Still smiling through all the challenges. Daddy loves you so much."
Nelson gave birth to her twins prematurely at 31 weeks due to rare complications during pregnancy. In an October Instagram post, she expressed pride in her body following the birth of her daughters and said that becoming a mother had made her realize how incredible her body truly is.
SMA is a progressive muscle-wasting disease that can be life-threatening if not treated. In 2021, a life-changing gene therapy drug called Zolgensma was approved by the NHS to treat babies with this condition. However, screening for SMA is currently only carried out on those who have a sibling with the condition. SMA UK is advocating for the disease to be added to a blood spot test that already checks newborn babies for 10 rare but serious conditions. According to SMA UK, an estimated 47 babies are born with SMA in the UK each year.
