Jesy Nelson, a member of Little Mix, shared a heartfelt moment on her social media on Friday (January 10), featuring one of her twin daughters.
Jesy, 34, recently spoke about her daughters, Ocean Jade and Story Monroe Nelson-Foster, both of whom have been diagnosed with a serious genetic condition known as SMA Type 1.
SMA, according to the Cleveland Clinic, is a genetic disorder that results in progressive muscle weakness.
In a detailed video posted on Instagram, Nelson recounted how her mother noticed the twins weren’t moving their legs much, prompting a series of hospital visits and tests. This led to the discovery that 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 went on to explain: “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 neck 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 is seen sitting on the floor with one of her twin daughters in a baby chair.
The little one is heard giggling as Jesy captions the video: “I’m so in love with her little laugh.”
Currently, testing for SMA is not included in the standard heel-prick screening in England, where Jesy resides.
Because of this, Jesy is advocating for the inclusion of SMA testing in newborn screenings.
“That’s what’s frustrating,” she explained on the 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.”