Little Mix singer Jesy Nelson took to Instagram and shared the heartbreaking news her twins, Ocean Jade and Story Monroe, had been diagnosed with spinal muscular atrophy (SMA)
A father has told how his toddler was left paralysed in both legs overnight due to the same condition with which Jesy Nelson’s twins have been diagnosed.
Charlie Brown, 29, has issued an urgent warning to the Little Mix star about what could lie ahead for little Ocean Jade and Story Monroe, who were born in May. Charlie’s daughter Dani-Rae, now four, uses a wheelchair as her spinal muscular atrophy (SMA) has got worse over time.
But Charlie, who shares Dani-Rae with 26-year-old Tyler, has reassured the Little Mix singer, who expressed her grief on This Morning on Thursday. Charlie said: “Our message to Jesy is that it will be okay — it’s not an easy road and we would never pretend otherwise.
“All the little milestones will feel like winning the lottery over and over. The thing that needs to change is newborn screening, but also medical professionals’ knowledge on this condition.”
READ MORE: Cat Deeley reveals emotional moment with ‘very upset’ Jesy Nelson backstage on This MorningREAD MORE: Mum of miracle SMA baby demands easy NHS test to stop more babies suffering
Charlie has backed the Mirror’s campaign for every newborn to get a simple £5 blood test on the NHS to detect for SMA. The condition causes progressive muscle weakness and wasting.
Dani-Rae became paralysed following a delayed diagnosis. Charlie, who is from Abertillery, south Wales, believes her plight — and those of families since — would have been lessened had such a blood test been available.
Charlie added: “If diagnosed and treated early, life is very different; the disease is stopped before it even starts. Or at least it’s caught early enough. While we are angry about our delayed diagnosis, we’re more angry that it’s still happening to other families three years later.”
Although little Dani-Rae will never be able to walk again, Charlie continues to champion the detection of SMA and raise awareness of it. The little girl suffers from type 1, the most severe type of SMA, which can sadly cause fatal respiratory failure in young children as the muscles around the lungs can’t cope with expansion.
There are treatments available to slow down the deterioration of muscles and give Dani-Rae a chance at independence, such as Zolgensma gene therapy.
Dad-of-two Charlie added: “She will never be able to walk again but we are going to try everything to give her the best chance possible of regaining as much movement back as she can.
“There are two types of treatment that could save her; gene therapy to hopefully stop further deterioration, and physio and hydro treatment to keep her muscles moving and hopefully build them up.





