Understanding SMA Type 1: Jesy Nelson’s Twins’ Diagnosis

Jesy Nelson has shared that her twin babies have been diagnosed with a rare neuromuscular disorder, SMA Type 1.

The former Little Mix star welcomed twin girls Ocean Jade and Story Monroe last year, and last week revealed that her daughters are living with Spinal Muscular Atrophy Type 1.

On social media, Jesy said: “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. If it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”

 

View this post on Instagram

 

A post shared by @jesynelson

Jesy said that her mother was first to notice that something was not right with the twins, who were born prematurely at 31 weeks, “A few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be.

“It wasn’t really a concern to me at the time because from the minute I left NICU, I was told ‘your babies are premature, so do not compare your babies to other babies. They won’t reach the same milestones, take them as they are and they will get where they need to be when they do’.

“After the most gruelling, three or four months and endless appointments, the girls have now been diagnosed with a severe muscular disease, called SMA Type 1.”

SMA Type 1 is a rare disorder than affects infants, causing nerve issues that weaken the muscles and leads to muscle atrophy.

Also known as Werdnig-Hoffmann disease, the condition affects every muscle in the body, and is generally spotted in infants who struggle to support their own heads and sit up.

There is no cure for SMA Type 1, but there are many treatments available. Early gene modification therapies can slow the condition’s progression and encourage improved muscle and motor function. Physical therapies can also help with strength and movement.

Following Jesy’s post, her partner Zion shared a photo of the twins with the caption: “Still smiling through the challenges. Daddy loves you so much.”

You can find out more about the condition here.