Jesy Nelson and her fiancé, Zion Foster, are navigating an emotional journey after their twin daughters, Ocean Jade and Story Monroe, were diagnosed with Spinal Muscular Atrophy (SMA) Type 1—a rare and severe muscle-wasting disease.
The couple joyfully welcomed their daughters in May last year, but their happiness soon turned to heartache. Jesy shared a tearful update on social media earlier this month, revealing the devastating diagnosis: SMA Type 1, the most serious form of the condition. Doctors warned that their little girls may never walk.
Speaking on This Morning, Jesy opened up about their fight: “They’ve had treatment now, thank God—that is a one-off infusion. It essentially puts the missing gene back in their bodies, stopping any remaining muscles from deteriorating. But muscles that have already been lost can’t be regained.”
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Jesy described the challenges ahead: intensive physiotherapy, uncertainty about mobility, and a life that has transformed overnight. “We’ve been told they will probably never walk, probably never regain neck strength, and will likely need wheelchairs. But there are incredible stories of children defying the odds, and that gives me hope.”
She shared candidly how their home has changed: “My house looks like a hospital now. There’s medical equipment everywhere. Story uses a breathing machine at night because she’s not strong enough to breathe on her own, and they both have feeding tubes. I had to learn all of this within days of the diagnosis—it’s overwhelming.”
Despite the hardships, Jesy expressed gratitude for their daughters’ smiles and happiness. “They have each other, and that’s beautiful. All I can do is provide love, positive energy, and keep up with the physio. My whole life has completely changed, but I’m determined to be there for them.”
Zion Foster, 27, shared his own heartfelt response in a touching poem posted on Instagram. Addressing their daughters, he wrote:
“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 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, nor forcing life to look 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.”
Together, Jesy and Zion are facing this unexpected path with resilience, love, and unwavering hope for their ‘little warriors.’