Jesy Nelson marks first birthday with Ocean Jade and Story Monroe tribute
Jesy Nelson marked her twin daughters’ first birthday with a tribute on Instagram, writing that she could not believe “it has been a whole year” since Ocean Jade and Story Monroe Nelson arrived. The post paired the celebration with a reminder of why she has kept pushing for SMA1 screening since their diagnoses in January.
“My tiny little super humans,” Nelson wrote, calling the girls “the strongest, most resilient little fighters I’ve ever known.” She added: “Happy Birthday my Ocean and Story you are my whole heart and soul I love you more than you will ever know.”
January diagnosis and petition
Nelson, 34, said in January that both girls had been diagnosed with SMA1, a condition that according to the NHS can cause muscle weakness, movement problems, breathing and swallowing issues, muscle tremors, and bone and joint problems. She launched a petition that has gathered more than 100,000 signatures calling on the Government to include SMA in the newborn blood spot screening test.
That campaign has already moved beyond social media. In January, Nelson met former Health Secretary Wes Streeting to discuss the impact early detection could have had on her twins, then visited 10 Downing Street in April. Her first-birthday tribute turns a private milestone into a public argument for screening babies sooner, while treatment is most effective soon after birth.
Emily Perl Kingsley poem
Nelson said she used Emily Perl Kingsley’s “welcome to Holland” poem because she felt it “sums up their journey so beautifully.” Kingsley’s poem describes what it feels like to raise a child with a disability, which fits the way Nelson has framed her own experience since the January diagnosis.
For parents following the same path, the practical takeaway is blunt: Nelson is not treating this as a one-off birthday post. She is using the attention around Ocean Jade and Story Monroe’s first year to keep pressure on the Government over newborn screening, and the signature count shows that message has already gathered momentum.
