Singer Jesy Nelson has taken to social media, sharing an adorable snap of her twins on a relaxing winter walk after her children, Ocean and Story, were diagnosed with SMA Type 1
Jesy Nelson has shared a new snap of her twin girls after revealing their life changing diagnosis. Earlier this month, the singer, 34, tearfully shared that her daughters had rare genetic condition SMA Type 1 and may never walk.
In her latest Instagram post, the mum was seen heading out for a sunny winter walk with her twins, Ocean and Story as the family wrapped up warm during the colder weather. Jesy’s daughters were seen lying back in their pram with feeding tubes inserted into their noses.
Babies often use these tubes when they are unable to digest food via their mouths. Her two tots were wrapped up with matching blankets and hats as Jesy pushed them along the street with a friend. In recent days, the former Little Mix singer has been flooded with support after opening up about the battles her young children are facing.
READ MORE: Jesy Nelson’s twins deserved better – Mirror demands £5 test for every newborn on NHSREAD MORE: Wes Streeting praises Mirror campaign demanding baby test after Jesy Nelson heartbreak
She recently explained that her two children had been diagnosed with SMA Type 1, known as Spinal Muscular Atrophy, which is a “rare genetic condition that can cause muscle weakness. It gets worse over time, but there are medicines and other treatments to help manage the symptoms.”
It’s reported that around 50 children are born in the UK with the same condition each year. Jesy welcomed ther two daughters in May last year at 31 weeks. Just days ago, she revealed the reality she now faces and shared a video of her daughters using their feeding tubes.
But while Jesy has been remaining happy and in good spirits for her children, she recently explained that her children have the most devastating form of SMA. In a video, she attempted to hold back tears, saying: “I am grieving a life I thought I was going to have with my children.”
SMA affects limbs, and those with the condition have difficulty breathing and swallowing, along with a delay in motor skills. Jesy said that at first, she hadn’t spotted any signs, but her own mother recognised that the two children hadn’t been developing as much for their age, which she believed had been down to the babies being premature.
“If it’s not treated in time, your baby’s life expectancy will not make it past the age of two,” she told fans. During an appearance on This Morning, Jesy said: “That is the part that frustrates me the most. I knew and saw all of the signs before I knew what SMA was.
“It was weird because from when I was in NICU [Neonatal Intensive Care Unit], the way they used to lay on my chest, they would have frog leg position. I did say to my mum, ‘Isn’t their belly an unusual shape? They breathe from their belly.’ That’s what frustrating – for me, if these were the cards I was always going to be dealt and there was nothing I could do about it, it would be easier for me to accept. But when you know there is something that can be done about it and it is lifechanging to your child, that’s the bit that I cannot accept.”
She later explained that her house “looks like a hospital” due to her childrens medical needs. Following Jesy speaking out, the Mirror has launched a campaign to ensure that no babies are left paralysed by the condition. If babies do not have an older sibling with SMA, they are usually not diagnosed until parents repeatedly present to the NHS to report that their baby is not lifting their head or moving.
The Mirror revealed in 2024 that an estimated 50 babies a week in the UK are currently being born with the muscle-wasting condition, which in almost all cases is not being diagnosed at birth. Pharmaceutical firm Novartis, which makes drugs to combat SMA, estimates that 33 of these will be left in a wheelchair because they were not screened at birth.
We are demanding that the Government immediately add a £5 blood test for spinal muscular atrophy (SMA) to the newborn heel prick test – something which has been done by most other developed nations. When diagnosed late, children typically require a wheelchair, breathing support, are fed through a pipe directly into their stomach and need a nurse at their bedside overnight to check they don’t stop breathing.
Source: Mirror
Leave a Reply