Jesy Nelson’s Mother Shares Heartbreaking Glimpse Of Family Life After Twins’ SMA Diagnosis
Jesy Nelson’s mother has offered an emotional glimpse into the family’s daily life after the singer’s twin daughters were diagnosed with spinal muscular atrophy.
Janice White appears in Jesy’s forthcoming documentary, Jesy Nelson: Life Changing, which follows the former Little Mix star as she adjusts to motherhood while campaigning for greater awareness of the rare genetic condition.
Jesy’s daughters, Ocean Jade and Story Monroe, were born prematurely in May 2025 and were later diagnosed with spinal muscular atrophy type 1, commonly known as SMA1.
The progressive condition causes severe muscle weakness and can affect movement, breathing and swallowing.
In one particularly moving scene from the documentary, Janice shows cameras a spare bedroom filled with medical equipment, feeding supplies and toys originally bought for the twins.
She explains that the items are kept upstairs because seeing them around the family home would be upsetting for Jesy.
Janice says: “This room is actually quite tidy, but it’s all things they can’t use — medical stuff, feeding tubes and things like that.
“If Jesy sees it downstairs, it makes her sad, so we keep it all up here.”
She then picks up a new elephant-shaped baby rocker which had been bought before the full extent of the girls’ needs became clear.
Janice explains that many standard baby products are unsuitable because Ocean and Story require specially adapted equipment to support their bodies and spines.
She adds that the family hopes to donate the unused toys and baby items to hospitals or organisations where they could help other children.
The deeply personal footage highlights how dramatically the family’s expectations of early parenthood changed after the twins received their diagnosis.
Jesy previously documented her difficult pregnancy and premature delivery in the Prime Video series Jesy Nelson: Life After Little Mix.
The new follow-up programme will focus more closely on the twins’ condition and Jesy’s efforts to campaign for newborn SMA screening across the UK.
Early diagnosis is particularly important because treatment may be most effective when given before significant symptoms develop.
Ocean and Story celebrated their first birthday in May, with Jesy sharing photographs from an intimate pastel-themed party surrounded by balloons and decorations.
The singer posed with both girls and reflected on the extraordinary emotional journey of her first year as a mother.
She also shared a video featuring the well-known poem Welcome to Holland, narrated in her own voice and accompanied by gentle piano music.
The piece compares raising a child with additional needs to planning a dream holiday to Italy, only to unexpectedly arrive in Holland.
Although the destination is different from the one originally imagined, the poem explains that it can still contain beauty, love and meaningful experiences.
It has long resonated with parents of disabled children and families whose lives have taken an unexpected path.
Jesy ended her birthday tribute with an emotional message to her daughters, describing them as her “heart and soul” and saying she loved them more than they could ever know.
The former X Factor winner shares Ocean and Story with singer and rapper Zion Foster.
The pair began dating in 2022 and later became engaged, but separated following the twins’ diagnosis.
Despite the end of their romantic relationship, they are understood to have remained close and continue to co-parent their daughters.
Jesy has spoken openly about the overwhelming fear, grief and love she has experienced since becoming a mother.
Her new documentary is expected to show both the medical realities faced by the family and the joyful moments they continue to share with Ocean and Story.
Rather than allowing their experience to remain private, Jesy is using her platform to call for wider newborn screening and earlier access to potentially life-changing treatment.
For Janice, the room filled with unused toys represents the life the family once expected.
But the documentary also shows a family determined to adapt, advocate and celebrate every precious milestone with the twins.
Behind the medical equipment and difficult conversations is a home filled with devotion — and a mother and grandmother determined to give Ocean and Story all the love and support they need.
