British singer Jesy Nelson has revealed to the world that her twin daughters are facing a rare health condition. Nelson told the details in an emotional video on Instagram, saying her 8-month-old girls, Ocean Jade and Story Monroe, are diagnosed with a neuromuscular disorder known as Spinal Muscular Atrophy (SMA) Type 1.
What did Jesy Nelson say about her twins’ rare diagnosis?
Nelson said her babies were diagnosed with SMA shortly after they were born premature at 31 weeks. The former Little Mix singer said she and her fiancé, Zion Foster, were told that the babies “won’t reach the same milestones” as other children. In the following months, the twins struggled to move their legs and eat properly.
“After the most grueling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscular disease called SMA type 1,” Nelson said in her video.
Struggling to control her tears, Nelson said it was hard to face the reality of knowing her children may never walk.
“We were told that they’re probably never gonna be able to walk, they probably will never regain their neck strength, so they will be disabled. And so the best thing we can do right now is to get them treatment and then just hope for the best,” she said.
What is Spinal Muscular Atrophy?
Spinal Muscular Atrophy is a neuromuscular disorder that results from the loss of a spinal nerve cell that is essential for muscle movement, according to the Cleveland Clinic. The genetic condition leads to weakened muscles. Symptoms of SMA are seen within the first six months after birth.
“It is the most severe muscular disease that a baby can get,” Nelson said.
She adds that life expectancy may be as low as two years if the condition is untreated. While she remains grateful to have her babies, Nelson said it’s devastating to see what they’re going through.
“In the space of two weeks of getting their diagnosis … I have to put them on breathing machines and do lots of stuff that no mother really should ever have to do on their child,” Nelson said.