Jesy Nelson launches petition after twins diagnosed with devastating condition

The 34-year-old said she was determined to push for change so other families do not face the same delays in diagnosis.

"I am starting a petition to try and get SMA on the newborn screening heel prick testing from birth, and I just need you to know that I am so determined to make this happen," Ms Nelson said.

"I am going to fight as much as I can to make this part of the newborn screening. It's currently under review, so I will keep you updated with that one, guys."

Ms Nelson welcomed her daughters, Ocean Jade and Story Monroe, prematurely at 31 weeks in May 2025 with her partner, Mr Zion Foster.

The pregnancy had been complicated by twin-to-twin transfusion syndrome.

She explained that concerns were first raised by her mother, Janice White, who noticed the babies were not moving their legs as expected.

However, those worries were initially dismissed due to the twins being born nine weeks early.

"From the minute I left NICU, I was told, 'Your babies are premature, so do not compare your babies to other babies,'" Ms Nelson said.

When the couple later raised concerns about feeding difficulties with their GP, they were reassured the babies were healthy and advised to keep trying "little and often".

After months of hospital appointments and testing, the twins were eventually diagnosed with SMA Type 1 at Great Ormond Street Hospital.

Ms Nelson said she was told her daughters would probably never walk and may never regain strength in their necks.

Spinal muscular atrophy is a rare genetic condition that affects the nerves controlling muscle movement and can be fatal in infancy if left untreated.

The charity SMA UK has stressed that early diagnosis is critical to improving outcomes for children with the condition.

"Today, we have effective treatments for SMA, but timing is everything," said Giles Lomax, the charity’s chief executive.

"The evidence is clear: babies who are diagnosed and treated before symptoms appear have significantly better health outcomes."

He added that once symptoms begin, damage to motor neurons cannot be reversed.

Professor Asma Khalil, of St George’s Hospital, University of London, said that in premature twins, early warning signs of SMA can easily be mistaken for the effects of prematurity.

"Floppiness and weak movement can be attributed to early birth, which may delay diagnosis and treatment," she said.

Without treatment, children diagnosed with SMA Type 1 typically do not survive beyond their second birthday.

The NHS currently carries out a blood spot test when babies are five days old, screening for nine rare but serious conditions.

SMA is not currently included, with testing only offered to newborns who already have a sibling with the disease.

In 2018, the UK National Screening Committee decided against adding SMA to the programme, citing limited treatment options and insufficient evidence on cost-effectiveness at the time.

An in-service evaluation pilot was approved in February 2025 to gather UK-specific data.

However, the rollout has stalled because the National Institute for Health and Care Research cannot recruit researchers until NHS England formally commits to delivering the pilot.

NHS England has said it supports further evaluation and is "determined to make" one-shot treatments available as quickly as possible.

Ms Nelson has received widespread support since sharing her family’s story.

Ms Ann Reel, a mother from Newry in County Down whose five-year-old daughter has SMA Type 1, offered words of encouragement.

"I want to tell Jesy Nelson, there’s hope. There is light at the end of the tunnel," Ms Reel said.

She explained that her daughter was diagnosed at nearly five months old and now attends mainstream school, can talk and play, and enjoys horse riding, although she cannot run.

"She’s thriving. She’s so strong," Ms Reel added.