Health and Me

Ishita Roy

Jesy Nelson’s Fiancé Writes A Heartbreaking Poem As A Tribute After Twins’ SMA Diagnosis

Jesy Nelson, former Little Mix singer, 34, and her fiancé, Zion Foster welcomed their twins, Ocean Jade and Story Monroe Nelson-Foster were devastated when the doctors broke the news that "they are probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled". Both the twins were diagnosed with SMA-1, a rare disease, known as the spinal muscular atrophy type 1.

Zion, 27, shared a poem for his eight-month-old warrior little girls. The Sun reported, he said: "They said it’s unlikely you’ll walk, you may not be able to talk, probably won’t be able to hold your head up, that’s what me and Jesy heard – SMA Type 1.

And it became so clear, doctors only go near what they can measure, so what’s certain?

I watch your smiles like sunsets, not promised, but real. I listen to you babble the sweetest melodies, in the moment it makes me wonder, if I keep telling you who I want you to be, what I want you to do, what I expect from you, am I loving you, or am I loving my fear?

If I take you for how God knitted you, just as you are, nothing removed, am I loving you? Am I accepting you?

Story, is your heart okay? Ocean, how’s your mind? I hear strength in your lungs every time you cry, two little warrior girls who already know how to fight.

Honestly, my worry isn’t the milestones, isn’t forcing life to live a different way. My worry is quieter than that, deeper. It’s about accepting you, loving you for who you are right now, without conditions.

No matter what tomorrow brings, and no matter what yesterday was."

<h2>What Treatment Jesy Nelson's Daughter Are Undergoing?</h2>

Jesy said, "They have had their treatment, thank God. A one-off infusion. That puts the gene back in their body that they don't have. It stops the muscles still working from dying. Any that have gone you can't regain them back." 

While she does not reveal the name of the treatment, it is a single dose gene treatment, where patients receive an intravenous adeno-associated virus stereotype 9 carrying SMN complementary DNA encoding the missing SMN protein, as mentions a 2017 study published in The New England Journal of Medicine, or the Zolgensma, a prescribed gene therapy used to treat children less than 2 years old with SMA. 

“Now it’s down to constant physio. We’ve been told they’ll probably never walk or regain their neck strength. They’ll probably be in wheelchairs.”

Also Read: <a href="https://www.healthandme.com/health-news/former-little-mix-singer-jesy-nelsons-twin-babies-have-sma-1-signs-she-is-asking-other-parents-to-look-out-for-article-153396307" data-type="tilCustomLink">Former Little Mix singer Jesy Nelson's Twin Babies Have SMA-1; Signs She Is Asking Other Parents To Look Out For</a>

<h2>Jesy Nelson Twins: What Is SMA-1?</h2>

SMA-1. a rare disease, known as the spinal muscular atrophy type 1 or the Werdnig-Hoffmann disease is when the muscle weakness appears at birth or within the first six months. This rare condition prevents infants from sitting unassisted and causing severe breathing, swallowing, and sucking difficulties, leading to a poor prognosis without aggressive support. This condition has impacted the twin babies of the former Little Mix singer Jesy Nelson. Her twin babies may never be able to walk. However, she said that her babies will "fight all the odds" after they were being diagnosed with such a rare genetic condition.

Nelson said that there could be some common signs to look out for, which includes floppiness, inability to hold yourself up without support, a "frog-like" positioning of the legs without much movement, and rapid breathing in the tummy.

"If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital, because time is of the essence, and your child will need treatment. And the quicker you get this, the better their life will be," she added.

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Jesy Nelson, former Little Mix singer, 34, and her fiancé, Zion Foster welcomed their twins, Ocean Jade and Story Monroe Nelson-Foster were devastated when the doctors broke the news that "they are probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled". Both the twins were diagnosed with SMA-1, a rare disease, known as the spinal muscular atrophy type 1. Zion, 27, shared a poem for his eight-month-old warrior little girls. The Sun reported, he said: "They said it’s unlikely you’ll walk, you may not be able to talk, probably won’t be able to hold your head up, that’s what me and Jesy heard – SMA Type 1.And it became so clear, doctors only go near what they can measure, so what’s certain? I watch your smiles like sunsets, not promised, but real. I listen to you babble the sweetest melodies, in the moment it makes me wonder, if I keep telling you who I want you to be, what I want you to do, what I expect from you, am I loving you, or am I loving my fear? If I take you for how God knitted you, just as you are, nothing removed, am I loving you? Am I accepting you?Story, is your heart okay? Ocean, how’s your mind? I hear strength in your lungs every time you cry, two little warrior girls who already know how to fight.Honestly, my worry isn’t the milestones, isn’t forcing life to live a different way. My worry is quieter than that, deeper. It’s about accepting you, loving you for who you are right now, without conditions.No matter what tomorrow brings, and no matter what yesterday was."What Treatment Jesy Nelson's Daughter Are Undergoing?Jesy said, "They have had their treatment, thank God. A one-off infusion. That puts the gene back in their body that they don't have. It stops the muscles still working from dying. Any that have gone you can't regain them back." While she does not reveal the name of the treatment, it is a single dose gene treatment, where patients receive an intravenous adeno-associated virus stereotype 9 carrying SMN complementary DNA encoding the missing SMN protein, as mentions a 2017 study published in The New England Journal of Medicine, or the Zolgensma, a prescribed gene therapy used to treat children less than 2 years old with SMA. “Now it’s down to constant physio. We’ve been told they’ll probably never walk or regain their neck strength. They’ll probably be in wheelchairs.”Also Read: Former Little Mix singer Jesy Nelson's Twin Babies Have SMA-1; Signs She Is Asking Other Parents To Look Out ForJesy Nelson Twins: What Is SMA-1?SMA-1. a rare disease, known as the spinal muscular atrophy type 1 or the Werdnig-Hoffmann disease is when the muscle weakness appears at birth or within the first six months. This rare condition prevents infants from sitting unassisted and causing severe breathing, swallowing, and sucking difficulties, leading to a poor prognosis without aggressive support. This condition has impacted the twin babies of the former Little Mix singer Jesy Nelson. Her twin babies may never be able to walk. However, she said that her babies will "fight all the odds" after they were being diagnosed with such a rare genetic condition.Nelson said that there could be some common signs to look out for, which includes floppiness, inability to hold yourself up without support, a "frog-like" positioning of the legs without much movement, and rapid breathing in the tummy."If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital, because time is of the essence, and your child will need treatment. And the quicker you get this, the better their life will be," she added.