“I hate when people say that kind of stuff because I agree, it’s a sacrifice if you’re actually a good father.”
Jesy Nelson’s fiancé is opening up about their twins’ recent diagnosis of spinal muscular atrophy.
Zion Foster, who proposed to the former Little Mix singer in September, took to Instagram on Jan. 14 to share a poem he wrote for the couple’s twin daughters Ocean and Story.
“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,” he said at the beginning of the poem.
“And it became so clear, doctors only go near what they can measure. So what’s certain?” he continued.
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Nelson and Foster welcomed their twin daughters prematurely on May 15 before bringing them home the following month.
On Jan. 4, Nelson revealed that Ocean and Story were both diagnosed with spinal muscular atrophy (SMA), also known as Werdnig-Hoffman disease.
According to the Cleveland Clinic, SMA “is a genetic condition that causes worsening muscle weakness” and the loss of lower motor neurons, which control muscle movement.
Type 1 is the most common and severe form of SMA, per the Cleveland Clinic.
“I watch your smiles like sunsets, not promised, but real. I listen to you babble the sweetest melodies," Foster continued in his poem.
"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?" he asked. "If I take you for how God knitted you, just as you are, nothing removed, am I loving you? Am I accepting you?"
Jesy Nelson’s fiancé calls his twins ‘two little warrior girls’
After revealing her daughters’ diagnoses, Nelson maintained hope that they’ll be okay.
“I have to be grateful because at the end of the day, they're still here and that's the main thing and they’ve had the treatment,” she said in her Jan. 4 announcement.
“I truly believe that my girls will defy all the odds and, with the right help, they will fight this,” she added.
Foster echoed that sentiment about his and Jesy Nelson’s twins.
"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,” he said in his poem.
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He then opened up about his fears.
"Honestly, my worry isn’t the milestones, isn’t forcing life to look a different way. My worry is quieter than that, deeper,” he continued.
“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," he concluded.
In the caption of his post, Foster praised his wife for using her platform to raise awareness.
“We are all one. Jesy addressing a huge flaw in our healthcare system is the definition of a superwoman.
Reality is, it’s indefensible and needs to be changed, simple,” he wrote.
“Test kids at birth for SMA in the UK now that there are revolutionary treatments available,” he added.
According to the BBC, all babies in the UK undergo a heel prick test at birth to screen for a variety of diseases, including cystic fibrosis, sickle cell disease, congenital hypothyroidism and metabolic diseases.
Spinal muscular atrophy is not among the diseases screened for — but change is on the horizon.
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According to the BBC, the Department for Health and Social Care (DHSC) will be screening hundreds of thousands of babies for SMA as part of an NHS trial.
