Jesy Nelson, a singer and mother of two, has provided her followers with an update after announcing earlier this year that her twin daughters were diagnosed with a genetic condition known as SMA type 1.
Nelson welcomed her twins, Ocean Jade and Story Monroe, with her fiancée Zion Foster in May 2025. During her pregnancy, Nelson faced complications and was diagnosed with Twin-to-Twin Transfusion syndrome (TTTS), a condition that occurs when twins share a placenta in the womb.
Following surgery, Ocean and Story were born prematurely and spent approximately four weeks in the NICU. As 2026 began, Nelson took to Instagram to reveal her daughters’ diagnosis of SMA (Spinal Muscle Atrophy) type 1, a condition that progressively deteriorates the body’s muscles.
“When they assessed the girls… we were told they were never going to be able to walk,” Nelson shared. “They would probably never regain their neck strength. They will be disabled. The best thing we can do right now is to get them treatment and hope for the best.”
Following this news, Nelson received an outpouring of support and kind messages from her fans. She recently shared an update on her Instagram Story to express her gratitude.
Speaking directly to her followers, Nelson expressed: “I just wanted to come on here to do another video to just basically say thank you, genuinely, so so much from the bottom of my heart for just the outpour[ing] of support and beautiful messages for me and just so many other families that are dealing with this horrible diagnosis.”
Nelson mentioned feeling ‘overwhelmed’ by the support and thanked those who shared her story, sought to understand SMA type 1, or sent ‘their beautiful messages’.
“Thank you from me and also the SMA community, we just appreciate it so so much,” Nelson stated.
She also announced her intention to launch a petition to include SMA in the newborn screening process from birth, declaring: “I just need you to know that I am so determined to make this happen.”
There exists a genetic test that can diagnose SMA type 1 in newborns, which involves a small heel prick similar to routine newborn screenings. This blood sample is then analyzed in a lab to detect changes in the SMN1 gene responsible for SMA Type 1.
In the United States, newborn screening for SMA, including SMA Type 1, is a standard procedure. However, in the UK, it has not yet been incorporated into the NHS newborn blood‑spot screening panel.
Nelson stated: “So I’m going to fight as much as I can to make this happen, to make this part of the newborn screening. It’s currently under review so I will keep you updated with that one.”
She concluded by expressing her gratitude once more: “We’ve got a long way to go and I appreciate you all so much.”