Little Mix star Jesy Nelson took to her social media on Friday (January 10) where she shared an adorable clip of one of her twin daughters.
Earlier this month, Jesy, 34, opened up about her daughters – Ocean Jade and Story Monroe Nelson-Foster – having been diagnosed with a ‘severe’ genetic condition called SMA Type 1.
SMA is a genetic condition that causes worsening muscle weakness, the 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 led 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 emotionally shared.
“It stands for Spinal Muscle Atrophy which affects every muscle in the body, from legs, arms, swallowing.”
Jesy Nelson took to Instagram to share the heartbreaking news (Instagram/@jesynelson)
Jesy 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.”
In a recent clip this week, Jesy could be seen sitting on the floor with one of her twin daughters in a baby chair.
The little one can be heard giggling, with Jesy writing: “I’m so in love with her little laugh.”
Jesy shared an adorable clip with her daughter (Instagram/@jesynelson)
Testing for SMA is not yet part of the routine heel-prick screening in England, where Jesy lives.
For this reason, the Little Mix star is advocating for the test to become part of newborn screening.
“That’s what’s frustrating,” she explained on UK daytime show, This Morning.
“If this was the card I was always going to get dealt and there was nothing I could do about it, then it’s almost easier for me to accept.
“But when you know that there is something that can be done about it, and it is life changing to your child, that’s the part that I cannot accept.”
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