When Jesy Nelson welcomed twin daughters Ocean Jade and Story Monroe last May, she had already weathered a pregnancy marked by rare complications and emergency surgery. Her babies arrived early, spent weeks in intensive care, and fought their way home. For a brief moment, it seemed the worst was over. But a quiet observation from Nelson’s mother would set off a chain of events no parent could prepare for.
On January 4, 2026, Nelson appeared on Instagram in tears. After months of hospital appointments and testing, she had received news that would change her family’s life forever. Her eight-month-old girls had been diagnosed with a rare genetic condition, one she described as a severe muscular disease affecting every part of their tiny bodies.
A Pregnancy Defined by Risk
Nelson, 34, announced her pregnancy in January 2025 alongside fiancé Zion Foster. From early on, medical complications cast a shadow over what should have been a joyful time.
Doctors discovered her twins were monochorionic diamniotic, meaning they shared a single placenta. Nelson explained in a candid video at the time that one baby might take all nutrients from the placenta, putting both at risk. Her fears soon became reality when she developed Twin-to-Twin Transfusion Syndrome, a rare disorder causing uneven blood flow between babies.
TTTS puts twins at risk for early delivery, neurological damage, heart damage, and can prove fatal. Nelson experienced stomach tightening and difficulty breathing, prompting an emergency hospital visit. Doctors determined surgery was necessary to give both babies a fighting chance.
By late March, Nelson shared good news with her followers. Surgery had worked. TTTS had cleared. Each week became a waiting game as she hoped her daughters would stay put just a little longer.
Early Arrival and Weeks in Intensive Care
Ocean Jade and Story Monroe arrived on May 15, 2025, at 31 weeks plus five days. Both babies went straight to neonatal intensive care, where they would remain for several weeks.
Nelson opened up about the NICU experience in an Instagram post, describing it as overwhelming and scary. She wrote about wanting to hold and comfort her crying babies but being unable to because of wires, tubes, and masks. Medical staff needed to monitor and treat them constantly, and Nelson felt helpless watching her daughters go through so much so soon.
Mid-June brought relief. Both girls came home just in time for Nelson’s 34th birthday. She called them fighters and marveled at how strong they had been through everything. For a moment, life felt like it was finally beginning.
A Grandmother’s Watchful Eye
Weeks passed, and Nelson settled into new motherhood. But her own mother noticed something concerning. Ocean and Story were not moving their legs as much as babies their age should. At first, doctors reassured Nelson that her daughters were healthy following their premature birth.
Then other signs appeared. Feeding became difficult. Both girls struggled to take in enough milk, and the problem worsened over time. What started as a minor concern grew into something Nelson could not ignore.
She began a grueling cycle of hospital appointments. For three to four months, she shuttled her daughters between specialists, seeking answers. Test after test brought no clarity until doctors finally identified what was wrong.
Understanding Spinal Muscular Atrophy Type 1
Spinal Muscular Atrophy is a genetic condition that causes progressive muscle weakness. Nerve cells in the spinal cord that control muscle movement begin to deteriorate, and muscles waste away over time. SMA Type 1, also called Werdnig-Hoffman disease, is both the most common and most severe form.
Symptoms appear within the first six months of life. Babies with Type 1 show limited head control and decreased muscle tone. Many struggle to swallow and breathe. Without support, children with Type 1 SMA do not survive past their second birthday.
Other warning signs include a lack of reflexes, inability to sit without support, a bell-shaped chest caused by weakened breathing muscles, and facial muscle weakness. Parents often notice their babies seem floppy or cannot hold their heads up.
SMA is inherited. Both parents must carry the altered gene for a child to develop the condition. About one in 40 people carries this gene, though most never know. An estimated 47 babies were born with SMA in the UK in 2024.
Facing an Impossible Prognosis
Nelson brought Ocean and Story to Great Ormond Street Hospital, where specialists assessed both girls. What she heard shattered her.
“We were told that they’re probably never going to be able to walk, they probably will never regain their neck strength so they will be disabled,” Nelson shared in her emotional video. “So the best thing we can do right now is to get them treatment and then just hope for the best.”
In the space of two weeks following diagnosis, Nelson learned to operate breathing machines and perform medical procedures no mother expects to do for her own children. The hospital became her second home. She described feeling like she was grieving a life she thought she would have with her daughters.
Yet Nelson made clear she remains grateful. Her girls are alive. Treatment exists. Without it, SMA Type 1 would claim them before their second birthday.
Gene Therapy Offers a Lifeline
Time is everything with SMA. Once symptoms appear, damage to motor neurons cannot be reversed. But a drug called Zolgensma, approved by the NHS in 2021, has changed outcomes for babies diagnosed early.
Zolgensma delivers a healthy copy of the affected gene directly into motor neurons. It aims to halt muscle weakness and allow children to reach developmental milestones they would otherwise miss. However, treatment must happen quickly. Irreversible damage may already be accumulating in a baby’s nervous system by the time symptoms become obvious.
Ocean and Story received their treatment in a rapid process once doctors confirmed the diagnosis. Nelson expressed relief that her daughters had access to care that could save their lives. But she also understood that treatment does not guarantee full recovery. Some children treated with gene therapy go on to walk. Others do not. Much depends on how early intervention begins.
Other Families Demand Earlier Screening
Nelson’s story struck a nerve with parents across the UK who had walked similar paths. Many spoke out about delays in diagnosis that cost their children precious time.
Charlie Brown from Blackwood in Caerphilly watched his daughter Dani-Rae show symptoms at five months old. Doctors did not diagnose her until she was 12 months. By then, muscle weakness had spread from her legs to nearly her entire body.
“Had she been screened at birth and treated, potentially she could have been walking, running, playing and being your typical child,” Brown told BBC Radio Wales Breakfast.
Dani-Rae now relies on a wheelchair. Her muscles continue to weaken, leaving her vulnerable to illness. Brown believes the NHS failed his daughter by taking too long to recognize what was wrong.
Samantha Williams from Crumlin had a similar experience with her son Lucian. She noticed symptoms while still pregnant, but GPs dismissed her concerns. When she brought Lucian in at four weeks old, she was told she was being an overprotective mother. By five weeks, he had stopped moving almost entirely. Diagnosis finally came at six weeks.
Lucian is now two years old and doing well, but Williams believes he would be doing even better if medical professionals had listened to her from the start.
Calls for Routine Newborn Screening Grow Louder
At present, the NHS offers a blood spot test when babies are five days old. It screens for nine rare but serious conditions. SMA is not among them. Only babies with siblings who have the condition receive screening.
SMA UK, a charity supporting affected families, wants SMA added to that routine test. Giles Lomax, the charity’s chief executive, argues that effective treatments now exist, but their success depends on catching the disease before symptoms appear. Babies diagnosed and treated early have significantly better health outcomes. Many reach milestones that would have been impossible without intervention.
In February 2025, the UK National Screening Committee approved a pilot screening program to gather more data. However, rollout has stalled. NHS England says it supports further evaluation and wants to make treatment as quick as possible for all children and families. Meanwhile, babies continue to be born with SMA and go undiagnosed until symptoms become impossible to ignore.
Hope Lives in County Armagh
Not every story ends in heartbreak. Ann Reel from Newry discovered her daughter Hollie, had SMA when the baby was nearly five months old. A chest infection landed Hollie in the hospital, and doctors realized she lacked the muscle strength to fight it off.
Hollie received gene therapy and went home with five machines to help manage her condition. Doctors warned Reel that her daughter might never walk, talk, or eat on her own.
Five years later, Hollie attends mainstream school. She talks, plays, sits up, balances, and goes horse riding. She does everything her friends do except run around.
“I’ll never forget when she brushed her hair for the first time. It was huge, we were told she might never be able to lift her head,” Reel said.
Reel wants Nelson and other parents to know that dark days do not last forever. Life with SMA is hard, but it can get better. Children treated early can defy expectations in ways that feel like magic.
Dr. Sandya Tirupathi, a consultant in paediatric neurology at Royal Belfast Hospital for Children, confirmed that gene therapy has proven life-changing for many patients. Children who once would have died in their first year or two now have a chance at near-normal lives. Some walk. All benefit from early treatment.
A Mother’s Message and Unwavering Hope
Nelson ended her video with a plea to parents everywhere. Anyone who notices warning signs in their child should seek medical help immediately. Legs that do not move enough, feeding difficulties, and floppy muscles all warrant urgent attention. Time is everything. Early treatment leads to better outcomes.
Her fiancé, Foster, shared Nelson’s video on his Instagram Stories, followed by a photo of Ocean and Story. He wrote that they were still smiling through all the challenges and that he loved them deeply.
Nelson refuses to accept the worst predictions for her daughters. She believes Ocean and Story will fight and defy all odds. With treatment, support, and time, she hopes they will go on to achieve things no one thought possible. For now, the hospital remains a constant presence in their lives. But so does hope.
