JESY Nelson has revealed her baby twins have been diagnosed with a devastating genetic disease which can be fatal.<\/p>\n
In a heart-breaking video, the singer said her daughters have the most severe form of a rare muscle wasting disease \u2013 and could die before the age of two without treatment.<\/p>\n
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Jesy took to Instagram today to reveal the heartbreaking diagnosisCredit: Instagram<\/p>\n
Jesy\u00a0welcomed her twin daughters,\u00a0Ocean Jade\u00a0and\u00a0Story Monroe, with partner\u00a0Zion Foster\u00a0on\u00a0May 15, 2025Credit: Instagram\/JesyNelson<\/p>\n
Jesy, who\u00a0gave birth to her twins Ocean Jade\u00a0and\u00a0Story Monroe prematurely at 31 weeks with partner\u00a0Zion\u00a0on\u00a0May 15, 2025, broke down as she described how the devastating diagnosis emerged.<\/p>\n
The twins, she said, had now been diagnosed with a condition called SMA Type 1, or Werdnig-Hoffmann disease, the most severe form of Spinal Muscular Atrophy.<\/p>\n
The lifelong disabling condition causes dramatic muscle weakness with severe breathing and swallowing issues and is commonly fatal without radical treatment.<\/p>\n
Tearful Jesy said: \u201cIf it\u2019s not treated in time, your baby\u2019s life expectancy will not make it past the age of two.\u201d<\/p>\n
The Little Mix star described how it was her mum Janice who had first showed concern about the twins soon after they were born.<\/p>\n
She said: \u201cA few months ago my mum noticed that the girls were not showing as much movement in their legs as they should be.<\/p>\n
\u201cIt wasn\u2019t really a concern to me at the time because from the minute I left NICU (Neonatal Intensive Care Unit), I was told \u2018your babies are premature, so do not compare your babies to other babies. They won\u2019t reach the same milestones, take them as they are and they will get where they need to be when they do\u2019.\u201d<\/p>\n
Jesy said health visitors had also described the babies as \u2018great and healthy\u2019 and when the couple then became concerned about their feeding were advised by GPs not to worry.<\/p>\n
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She then described the shocking development as they sought further advice.<\/p>\n
She said: \u201cAfter the most gruelling, three\/four months and endless appointments, the girls have now been diagnosed with a severe muscular disease, called SMA Type 1.\u201d<\/p>\n
She then explained how it is the most severe muscular disease a baby can get.<\/p>\n
Jesy opened up about how the disease \u201covertime, it kills the muscles in the body\u201d.<\/p>\n
Jesy then recalled the \u201cvery rapid process\u201d of her baby girls getting treated.<\/p>\n
\u201cMe and Zion had to sign lots of forms before they even got their diagnosis,\u201d she added.<\/p>\n
\u201cWhen they assessed the girls at Great Ormond Street, we were told that they will probably never be able to walk.<\/p>\n
\u201cThey probably will never regain their neck strength, so they will be disabled.<\/p>\n
\u201cSo the best thing we can do right now is get them treatment and just hope for the best.\u201d<\/p>\n
Jesy then revealed that the girls, now seven and a half months old, have had their treatment, which she is \u201cso grateful for, because if they don\u2019t have it, they will die\u201d.<\/p>\n
\n\t\t\t\tSpinal Muscular Atrophy: Signs and symptoms\n\t\t\t<\/p>\n
\n\t\t\t\t\t\tSpinal muscular atrophy is a disease which takes away a persons strength and it causes problems by disrupting the motor nerve cells in the spinal cord.\t\t\t\t\t<\/p>\n
This causes an individual to lose the ability to walk, eat and breathe.<\/p>\n
There are four types of SMA \u2013 which are based on age.<\/p>\n
Type 1 is diagnosed within the first six months of life and is usually fatal.
\nType 2 is diagnosed after six months of age.
\nType 3 is diagnosed after 18 months of age and may require the individual to use a wheelchair.
\nType 4 is the rarest form of SMA and usually only surfaces in adulthood.<\/p>\n
What are the symptoms?<\/p>\n
The symptoms of SMA will depend on which type of condition you have.<\/p>\n
But the following are the most common symptoms:<\/p>\n
\u2022 Floppy or weak arms and legs<\/p>\n
\u2022 Movement problems \u2013 such as difficulty sitting up, crawling or walking<\/p>\n
\u2022 Twitching or shaking muscles<\/p>\n
\u2022 Bone and joint problems \u2013 such as an unusually curved spine<\/p>\n
\u2022 Swallowing problems<\/p>\n
\u2022 Breathing difficulties<\/p>\n
However, SMA does not affect a person\u2019s intelligence and it does not cause learning disabilities.<\/p>\n
How common is it?<\/p>\n
The majority of the time a child can only be born with the condition if both of their parents have a fault gene which causes SMA.<\/p>\n
Usually, the parent would not have the condition themselves \u2013 they would only act as a carrier.<\/p>\n
Statistics show around 1 in every 40 to 60 people is a carrier of the gene which can cause SMA.<\/p>\n
If two parents carry the faulty gene there is a 1 in 4 (25 per cent) chance their child will get Spinal muscular atrophy.<\/p>\n
It affects around 1 in 11,000 babies.<\/p>\n
\u201cI feel like I\u2019ve almost had to become a nurse in the space of two weeks,\u201d Jesy added, explaining how she has had to put her daughters on breathing machines.<\/p>\n
\u201cThe reason I wanted to make this video was because, the last few months has honestly been the most heartbreaking time of my life. I feel like my whole life has done a 360.<\/p>\n
\u201cI\u2019m grieving a life I thought I was going to have with my children,\u201d she emotionally said, before acknowledging that she is grateful to have them.<\/p>\n
\u201cI truly believe that my girls will defy all odds. And with the right help, they will fight this, and go on to do things that have never been done.\u201d<\/p>\n
Jesy fought back tears describing the twins diagnosisCredit: Instagram\/jesynelson<\/p>\n
Jesy said it was her mum Janice who first noticed an concern with the girlsCredit: Instagram<\/p>\n
Jesy then said that she wanted to make the video because if the disease is detected early enough in the first few months of a baby\u2019s life \u201ca lot of this stuff could be prevented\u201d.<\/p>\n
She then explained how the treatment is where the gene, that they don\u2019t have, is put back in the body.<\/p>\n
But Jesy affirmed how \u201cthere is no cure for SMA\u201d but added how the treatment can help.<\/p>\n
She then detailed some of the symptoms to look out for in babies, such as \u201cfloppiness\u201d and not being able to hold their head up on their own.<\/p>\n
\u201cIf any one is watching this video and they think they see these signs in their child, then please, please take your child to doctor, to the hospital, because time is of the essence.\u201d<\/p>\n
Fans flocked to the comments section to support Jesy amid her twins\u2019 diagnosis. <\/p>\n
\u201cMy hearts is shattered. Sending you nothing but love and prayers for your two little angels,\u201d penned one.<\/p>\n
\u201cI\u2019m in awe of your strength and bravery\u2026 the best mama ever! Love you guys so much,\u201d added a second.<\/p>\n
Shortly after Jesy shared the highly emotional video, her partner Zion Foster spoke out about their daughters\u2019 diagnosis. <\/p>\n
Taking to his Instagram page, Zion shared a photo of his daughters in what looked a stroller.<\/p>\n
With tubes attached to their noses, the two tots could still be smiling widely.<\/p>\n
Alongside the photo, Zion wrote: \u201cStill smiling through all the challenges.<\/p>\n
\u201cDaddy loves you so much.\u201d<\/p>\n
Jesy and Zion have been through a gruelling few months of hospital appointments with their two baby girlsCredit: jesynelson\/Instagram<\/p>\n
Jesy urged people to look out for the symptoms of SMA Type 1 to catch an early diagnosisCredit: Instagram\t\t\t\t\t\t<\/p>\n","protected":false},"excerpt":{"rendered":"JESY Nelson has revealed her baby twins have been diagnosed with a devastating genetic disease which can be…\n","protected":false},"author":2,"featured_media":216711,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[32],"tags":[430,124948,156,4791,111,139,69,5017,130838,130839],"class_list":["post-216710","post","type-post","status-publish","format-standard","has-post-thumbnail","category-celebrities","tag-celebrities","tag-children-parenting-and-family-life","tag-entertainment","tag-instagram","tag-new-zealand","tag-newzealand","tag-nz","tag-parenting-advice","tag-pregnancy-and-childbirth","tag-the-x-factor"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/216710","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=216710"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/216710\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/216711"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=216710"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=216710"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=216710"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}