Jesy Nelson marked a deeply emotional milestone on Friday, celebrating her twin daughters’ first birthday with a heartfelt Instagram video capturing the highs and lows of their first year. The singer’s daughters, Ocean Jade and Story Monroe, were diagnosed with SMA1 (spinal muscular atrophy) in January, a rare genetic condition that leads to progressive muscle wasting, meaning they are unlikely to walk or regain full neck strength.
In the touching montage, Jesy shared precious clips from their lavish birthday party, trips to Great Ormond Street Hospital, and key moments from their daily lives. Over the footage, she reflected on the challenges of raising children with disabilities, saying: “I’m often asked to describe the experience of what it’s like to raise a child with a disability… to help people who have not had that unique experience understand it.”
Jesy read the iconic 1987 poem Welcome to Holland by Emily Perl Kingsley, which poignantly describes the emotional journey of parenting a child with a disability. She added a personal note to her daughters:
“I cannot believe it has been a whole year since having my beautiful baby girls. They have been through so much… There will never be enough words to describe just how incredible they actually are. My tiny little superhumans. The strongest, most resilient little fighters I’ve ever known… Happy Birthday my Ocean and Story, you are my whole heart and soul, I love you more than you will ever know.”
Since her daughters’ diagnosis, Jesy has campaigned tirelessly to expand NHS newborn screening for SMA, highlighting the urgent need for nationwide coverage. She has met with politicians, including Wes Streeting, and visited the Prime Minister’s residence to advocate for testing, calling attention to the postcode lottery that currently limits access.
Despite the progress, Jesy remains determined, emphasising that all babies’ lives should matter and expressing gratitude to supporters who helped her petition reach 100,000 signatures, now debated in Parliament.
Through both her advocacy and her tender celebration of Ocean and Story, Jesy Nelson has shared a message of resilience, love, and hope, honouring her daughters’ first year with courage and unwavering devotion.
