Jesy Nelson has shared a fresh update on her twin daughters’ health after speaking earlier this year about their SMA Type 1 diagnosis.
SMA is a “genetic condition that causes worsening muscle weakness”, according to Cleveland Clinic. While there is currently no cure, treatments such as therapies and medication can improve quality of life and help manage symptoms.
Nelson previously explained that she first became concerned after noticing her babies’ legs weren’t moving as expected, prompting her to seek medical advice.
“After the most gruelling three to four months and endless appointments, the girls have been diagnosed with a severe disease called SMA type one,” the Little Mix star stated.
“It stands for Spinal Muscle Atrophy which affects every muscle in the body, from legs, arms, swallowing.”
In her latest social media update, Nelson said her twins have now been fitted with leg splints designed to help correct their foot positioning and “flatten their feet”.
“So, today I had to go and pick up the girls’ splints because they’re feet are pointing this way and they need to be flattened out and it made me really sad,” the singer explained in a video.
As she showed the splints to viewers, she added: “But have you ever seen anything cuter in your life, look at them.”
Nelson then went on: “This one is Story’s, she has hearts and Ocean has butterflies. It made me sad though, it’s just another reminder.”
Since first discussing the diagnosis, Nelson has continued to speak candidly about the realities of day-to-day life for families affected by SMA Type 1.
“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,” Nelson previously said on Instagram.
“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.”
Nelson has also been advocating for earlier detection, urging that newborns be offered a heel-prick blood test that could identify SMA Type 1 as quickly as possible.
“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,” Nelson previously said on ITV’s This Morning.
“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.”