Jesy Nelson, Former Little Mix Singer, Warns of Rare Genetic Condition that Threatens Her Twins' Ability to Walk
In a heart-wrenching Instagram video, Jesy Nelson has revealed the devastating diagnosis of spinal muscular atrophy type 1 (SMA1) for her twin babies. The condition, which affects muscle strength and movement, makes it extremely unlikely that Ocean Jade and Story Monroe Nelson-Foster will ever walk or regain their neck strength.
Nelson, who welcomed her twins in May after a grueling four-month hospital appointment ordeal, expressed her gratitude for the treatment that has saved their lives. However, she emphasized that time is of the essence when it comes to this condition, highlighting the importance of early detection and treatment.
SMA1 is the most severe form of the genetic neuromuscular disorder, causing progressive muscle weakness, loss of movement, and paralysis. According to NHS data, about 70 children are born with SMA each year in the UK, with fewer than one in ten surviving to the age of two without treatment.
Nelson shared her experience of noticing her twins' floppiness, inability to hold themselves up without support, and rapid breathing in their tummies. She urged parents to be vigilant for these signs, as early detection is critical for better outcomes.
The singer also spoke about how her mother initially raised concerns after observing the twins' limited movement in their legs. However, due to their premature birth, Nelson was reassured by doctors that their development would likely be behind that of other babies.
As she navigates this challenging time with her children, Nelson remains optimistic and determined. Despite feeling like her life has been turned upside down, she believes her girls will "fight all the odds" and, with the right help, overcome this condition.
Nelson's courageous video serves as a wake-up call for parents to be aware of SMA1 and its signs. As she herself notes, time is precious in this fight against the disease.
In a heart-wrenching Instagram video, Jesy Nelson has revealed the devastating diagnosis of spinal muscular atrophy type 1 (SMA1) for her twin babies. The condition, which affects muscle strength and movement, makes it extremely unlikely that Ocean Jade and Story Monroe Nelson-Foster will ever walk or regain their neck strength.
Nelson, who welcomed her twins in May after a grueling four-month hospital appointment ordeal, expressed her gratitude for the treatment that has saved their lives. However, she emphasized that time is of the essence when it comes to this condition, highlighting the importance of early detection and treatment.
SMA1 is the most severe form of the genetic neuromuscular disorder, causing progressive muscle weakness, loss of movement, and paralysis. According to NHS data, about 70 children are born with SMA each year in the UK, with fewer than one in ten surviving to the age of two without treatment.
Nelson shared her experience of noticing her twins' floppiness, inability to hold themselves up without support, and rapid breathing in their tummies. She urged parents to be vigilant for these signs, as early detection is critical for better outcomes.
The singer also spoke about how her mother initially raised concerns after observing the twins' limited movement in their legs. However, due to their premature birth, Nelson was reassured by doctors that their development would likely be behind that of other babies.
As she navigates this challenging time with her children, Nelson remains optimistic and determined. Despite feeling like her life has been turned upside down, she believes her girls will "fight all the odds" and, with the right help, overcome this condition.
Nelson's courageous video serves as a wake-up call for parents to be aware of SMA1 and its signs. As she herself notes, time is precious in this fight against the disease.
I was browsing thru Instagram & came across Jesy Nelson's vid about her twin babies' diagnosis w/ spinal muscular atrophy type 1 (SMA1) 
it's like 1 in 70 kids born in the UK gets this rare genetic condition but only 1 in 10 survive to age 2 without treatment 
. Did u know that SMA1 is so severe it causes progressive muscle weakness, loss of movement & paralysis? 
according to NHS data, there's a 90% mortality rate for kids w/ this condition before age 5 
. I'm sending all my love to Jesy & her fam 
I mean we can't change the diagnosis but what we can do is spread awareness 
about this rare genetic condition that affects 1 in 10 babies born with it each year 
and how crucial early detection & treatment are 
so let's all take a moment to appreciate these little warriors who are already fighting for their lives 
And what's up with the NHS data saying 70 kids are born with SMA each year? Shouldn't that be, I don't know, a national priority or something? 
jesy nelson's post is literally makin me feel less alone wen its rite? we should 4get 2 shwcase perfect moms & perfection 2. her 3 girls dont matter if they cant walk or watever, ther lives r worth it 
. And yeah, she's totally right that time is of the essence here... we're talking life-or-death situation 
. I love how she's staying positive and determined though - those twin girls are going to fight all the odds and come out on top 
– I'm sending all my love to Jesy and her babies 
.
! I'm so glad she shared her story to raise awareness and help others detect early signs... those floppiness, inability to hold themselves up without support, rapid breathing... yikes! 
), it's making me super vigilant for any unusual behavior in my little one. I hope Jesy gets the best treatment possible and that her girls will be blessed with strength & resilience 
as a mom myself, i can only imagine how scary it must be to see your little one flopping around like that... i hope Jesy finds some sort of support system that helps her navigate this super tough road ahead 
Time really is precious here... I'm so grateful for parents like Jesy Nelson who are sharing their experiences so others can be vigilant. And to Jesy, I just wanna say you and your girls are so strong 
We're all sending love and positive vibes your way 
. I mean, can u even imagine not bein able to walk or movin' at all? 
So yeah, let's all just take a sec and learn about SMA1... 70 kids are born with it every year in the UK alone 
. We gotta be more aware of the signs so parents can get their babies to treatment ASAP 
. It's like, time is literally runnin' out here 
. Let's all just spread love and support for these fams 
