Jesy Nelson, who recently revealed her twins have been diagnosed with SMA type 1 has revealed her plans to kickstart a petition to get all newborns screened for the disease
Jesy Nelson has said she’s ‘determined’ to ‘fight’ as she shared her next plans after her twins devastating SM1 Type 1 diagnosis.
The former Little Mix star, 34, received an outpouring of love as she announced her twin babies, Ocean and Story, who were born in May, had been diagnosed with SMA Type 1. Spinal muscular atrophy type 1 (SMA Type 1) is a rare genetic condition causing muscle weakness, which can become fatal if left undiagnosed..
Following the announcement, in which Jesy revealed doctors have told her her daughters may never be able to walk, Jesy shared another video in which she shared her plans to launch a petition to get every newborn screened for the disease.
Jesy revealed she is petitioning for newborn babies to be screened for spinal muscular atrophy using a heel prick test. The earlier SMA is diagnosed, the better the outcome for those effected, so screening at the newborn stage could save lives.
While the NHS do offer a heel prick test at 5 days old, which screens for nine serious conditions, it does not test for SMA. NHS Scotland recently announced plans to add it to their screening in 2026, but NHS England is yet to announce such plans.
Speaking on a video shared on her Instagram story, Jesy said: “Hey guys, I just wanted to come on here to do another video to just basically say thank you, genuinely, so so much from the bottom of my heart for just the outpour of support and beautiful messages for me and just so many families qwho are dealing with this horrible diagnosis.
READ MORE: Jesy Nelson shares dismissive reply from GP after she shared fears over twinsREAD MORE: Early sign parents should watch out after Jesy Nelson reveals twins devastating diagnosis
“Genuinely, I’m actually overwhelmed with the amount of support, you know, I just wanted to say thank you to everyone that shared it, to everyone that just wanted to learn about it, that’s taken the time to watch it and sending me their beautiful messages – thank you from me, and also the SMA community, we just appreciate it so, so much.
“Also I just wanted to let you guys know that I am starting a petition to try and get the SMA on the newborn screening heel prick testing from birth. And I just need you to know that I am so determined to make this happen. So I’m gonna fight as much as I can to, you know, make this part of the newborn screening. It’s currently under review, so I will keep you updated with that one guys. And, also, I’m gonna be on This Morning tomorrow, which should be really fun. So, yes if you want to tune in to watch me on that I will be on there just chatting about my experience with having two beautiful baby girls with SMA Type 1 and what that’s like and, yeah, so if you wanna tune in – amazing. Love you all so, so much and like I said I can’t thank you enough for the support. We’ve got a long way to go and I appreciate you all so much. Thank you.”
When Jesy made the sad announcement about her twins health in an emotional Instagram post on Sunday, she revealed the disease is the “most severe muscular disease that a baby can get”. She added: “They will be disabled. The best thing we can do right now is get them treatment and just hope for the best.”
Using her platform, the singer now hopes to raise awareness of the early warning signs of SMA. She said that she raised some concerns to doctors that were initially dismissed and how a simple test at birth may have been able to save her children’s muscles.
The singer explained that her twins were born premature so she initially dismissed her mum’s concerns about the twins and their lack of leg movement – as she was told by doctors not to compare her babies to others as they will meet milestones at a different time.
However, when they started struggling to feed she started questioning the doctors but says she was dismissed. It took months of hospital visits and tests for the twins to be diagnosed and treated.
Source: Mirror
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