Singer Jesy Nelson has shared a sweet video of her twin daughters, Ocean and Story, holding hands just days after she shared that crucial medical equipment was stolen along with her car
Jesy Nelson has shared an adorable video of her twin daughters. The singer revealed in January that her two daughters, Ocean and Story, nine months old, had been diagnosed with Spinal Muscular Atrophy Type 1, a rare condition affecting the muscles.
Since the twins received their diagnosis, singer Jesy has been tirelessly campaigning for the NHS to introduce testing on newborns for SMA1, explaining that her daughters are unable to walk due to being diagnosed at a later stage. Jesy’s daughters require round-the-clock care. Earlier this month, her car, along with vital medical equipment, was stolen from her driveway.
Today, the songstress who found fame as one quarter of Little Mix shared a clip of her little girls lying down on the floor, holding hands. The two tots wore matching yellow outfits, decorated with lemons, as they enjoyed the warmer weather.
Captioning her upload, Jesy wrote: “My whole heart and soul” over the video, which featured a voice-over asking what a person does for a living. “I love my kids, I love their mother, for some reason there’s something more important than that,” the voice over added.
Her post, which has been liked thousands of times, was soon flooded with messages from celebrity friends and fans. Singer Whigfield penned: “They’re so beautiful.” Love Island’s Shaughna Phillips added: “Precious angels.”
One fan said: “Dear heavenly father, continue to look after and bless these beautiful babies, in Jesus’ name, amen.” “Beautiful girls, love seeing this Jesy,” commented a second. Earlier this month, Jesy offered a £10,000 reward for the return of the medical equipment, which was stolen.
She asked anyone with information to contact her or the police as “I have so much of my girls’ hospital equipment in that car that’s really needed.” She added that the car was last picked up at 3am around Chelmsford on April 19 and was offering a “10k reward to whoever helps recover it.”
The singer recently celebrated a ‘major milestone’ and said she is ‘really proud’ how far things have come. “I just wanted to come on here to share some information and news that I have heard over the last couple of days,” she said. “As you know I’ve been campaigning to try and get SMA as part of the newborn screening here in England. My girls were diagnosed with SMA Type 1, and unfortunately, they weren’t tested at birth because it wasn’t here in England.
“They have now decided to roll that out in October for all babies in England to be tested at birth for SMA, which is absolutely incredible. I know it is a really big moment for the SMA community because this has been going on for years, trying to get this passed, so yeah, it is a real proud moment.”
The Mirror is also campaigning for all newborn babies to be tested for SMA so they can be given new treatments which are effectively a cure, if administered at birth.
The star told us after the news: “It’s just bittersweet because we’re not fully there yet. It’s like literally a postcode lottery because it’s not the whole of England. There’ll be 163,000 babies that won’t get screened – and that is a lot of babies. If you live in a certain part of the country, you’re not going to get tested.
“There are truly life-changing treatments out there, so no baby should be an experiment – showing what the difference is. This shouldn’t even be a thing. All babies should be getting tested, and all babies should be living.”
There are now three treatments that stop the disease progressing, currently approved on the NHS. The first Nusinersen, which has a brand name Spinraza, is injected directly into the spinal cord every four months, and encourages the body to produce more SMN protein.
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