Jesy Nelson 'heartbroken' as twin daughters struggle in heatwave
Jesy Nelson gave birth to Ocean and Story last year and doctors later confirmed both girls were battling SMA Type 1, a rare, inherited genetic disease that damages motor neurons in the spinal cord.
Jesy Nelson broke down in tears and admitted her “heart was broken into a million pieces” after sharing an update on her twin daughters on Instagram.
The former Little Mix star gave birth to Ocean and Story - her first children with her ex-fiance Zion Foster - last year and doctors later confirmed both girls were battling SMA Type 1, a rare, inherited genetic disease that damages motor neurons in the spinal cord.
While there is no cure for the disease, there are things that can be done to help slow down the progression.
In a video on her Instagram Stories, Jesy admitted that while she knows she has to put her girls in the devices meant to help them, it’s heartbreaking to do so when there’s a heatwave, like the one the UK is currently going through.
Over the top of a video of her girls in their chairs, Jesy said: “I've cried all day. Imagine having to wear a spinal jacket and splints in this heat. I cannot even begin to tell you how much this breaks my heart into a million pieces.
“But if I don't put them in these every day, their spines and feet will only deteriorate and get worse.
“These will never correct their spine or feet, it will only prevent it from getting any worse.
She added: “Once again, no future SMA babies need to suffer like this if they are given a heel prick test and treatment from birth!”
Jesy shared the heartbreaking moment she was given the news of her daughters’ diagnosis in Amazon Prime documentary Jesy Nelson: Life Changing.
After being told about the diagnosis, Jesy said: “I can't believe this is happening. It's the most severe muscle disease a baby can have. I don't know how we are going to do this. I feel like I'm going to feel heartbroken for the rest of my life."
Jesy shared the clip on her Instagram page and told followers it will give a glimpse into her new world dealing with her twins' health struggles.
In a caption, she wrote: "I'm really not sure where to start with this one … All I can say is that I urge everyone to watch this documentary.
"It's the most heartbreaking series I've ever had to make, but it's one that needed to be made if we're ever going to see real change.
"This is only a small glimpse into what my girls have to go through every single day. It's the reality that so many children born with SMA have to endure and this is only the beginning of their lives. "I truly hope this helps people understand why the heel prick test and treatment from birth are so incredibly vital. Early diagnosis can change EVERYTHING.
"I'll keep saying it until no family has to experience this again: no future babies born with SMA should have lives that look like this. Please if you watch one thing, let it be this.”
