Signs of SMA type 1 as Little Mix star Jesy Nelson reveals twin girls' devastating diagnosis
Jesy Nelson has been told that her twin babies may never be able to walk
Jesy Nelson shared a tearful video on Instagram as she revealed that her daughters have been diagnosed with a 'severe' genetic condition called SMA type 1.
The Little Mix star welcomed twins Ocean Jade and Story Monroe Nelson-Foster in May 2025.
It hasn't been an easy run for the singer on her journey to parenthood. While she was pregnant, the 34-year-old was diagnosed with something called Twin-to-Twin Transfusion syndrome (TTTS) and had to undergo surgery.
TTTS is 'rare disorder that affects identical twin pregnancies' and happens when two babies share a placenta in the womb. It causes uneven blood flow between the two babies and puts the twins at risk for early delivery, neurological damage, heart damage and can even be fatal.
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Fortunately, both Ocean and Story went on to be okay, however, they were born prematurely and spent around four weeks in the NICU.
But the young family is now facing yet more health hardships in the wake of the twins being diagnosed type 1 spinal muscular atrophy (SMA).
What is SMA type 1?
SMA is a genetic condition that causes worsening muscle weakness, Cleveland Clinic explains.
In a lengthy video shared to Instagram, Nelson said that her mom had noticed that the girls weren't moving their legs very much. This sparked a series of hospital appointments and tests which lead to the Little Mix alum being told her daughters have SMA.
"After the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA type one," she shared.
"It stands for Spinal Muscle Atrophy which affects every muscle in the body from legs, arms, swallowing."
Nelson continued: "Over time, it kills the muscles in the body. If it’s not treated in time, your baby's life expectancy will not make it past the age of two.
"Once the girls got treated, it was a very rapid process. Time is of the essence with this disease.
"When they assessed the girls at Great Ormond Street, we were told they were never going to be able to walk. They would probably never regain their next strength. They will be disabled. The best thing we can do right now is to get them treatment and hope for the best."
There are five different types of SMA, and Nelson's girls have type 1.
According to Cleveland Clinic, symptoms of this particular SMA will rise within the first six months of life and include limited head control and decreased muscle tone.
The website continues: "Infants with type 1 SMA also have difficulty swallowing and breathing. Without breathing support, children with type 1 SMA die before their second birthday."
Other symptoms of type 1 SMA include:
- lack of reflexes
- inability to sit without support
- abnormal breathing pattern
- a bell-shaped chest
- facial muscle weakness
The girls have since had their treatment, and Nelson said the hospital has become her 'second home'.
The singer went on to describe the last few months as 'the most heartbreaking time of my life'.
Nelson concluded the heartbreaking video: "I truly believe that my girls will defy all the orders and with the right help they will fight this."
Niamh Shackleton