Jesy Nelson has opened up about the heartbreaking reality of her ‘intense’ daily life since her twin daughters were diagnosed with SMA Type 1.
The former Little Mix star, 34, told the Daily Mail the medical procedures her babies must endure each day are the hardest, leaving her feeling like she’s hurting them as they cry and scream.
Jesy described caring for twins Ocean Jade and Story Monroe as an emotional rollercoaster, with some weeks ‘really f***ing s***’ and others slightly lighter.
The girls were diagnosed with SMA Type 1, a rare genetic condition that causes severe muscle weakness, eight months after their birth.
Now Jesy is campaigning for SMA testing to be included in the newborn blood spot test, saying early diagnosis could dramatically improve a child’s future.
She and ex-partner Zion Foster, 27, never expected to be caring for their babies in such a way, and Jesy says it’s a daily struggle, having to provide for their medical needs when all she wants is to be their mother.
Jesy Nelson has opened up about the heartbreaking reality of her ‘intense’ daily life since her twin daughters were diagnosed with SMA Type 1
The former Little Mix star told the Daily Mail the medical procedures her babies must endure each day are the hardest, leaving her feeling like she’s hurting them as they cry and scream
Jesy told the Daily Mail: ‘Every day is so full-on, I can speak about it, but I’ll never be able to explain how intense it is until you see it.
‘There are a lot of medical things I have to do which I am still really struggling with; I’ll be honest with you. I never expected that to be part of my life and it’s tough.
‘They’re so tiny and I have to do things which I know are doing them good but at the time when they’re crying and screaming, it feels like I’m hurting them and I hate that I have to be the person to do that. I just want to be their mum.’
When asked about a typical day with her twin daughters, Jesy said it’s impossible to describe, as no day is ever the same emotionally.
She added: ‘I don’t know how to explain my life in the day because sometimes it’s really f***ing s*** and then other times, I don’t necessarily forget about their diagnosis but there are days when they are lighter and they’re not as heavy.
‘So many mums have told me that’s what it’s going to be like and that’s why I need to take each day as it comes.
‘It’s a rollercoaster, I don’t feel like this is going to be a steady journey at all.
‘Right now, they’re doing really well, thank God, they have had their infusion and that’s the main thing. And they have each other and family around them who love them so much.’
When asked about a typical day with her twin daughters, Jesy said it’s impossible to describe, as no day is ever the same emotionally
The singer experienced a complicated pregnancy before welcoming twin daughters in May last year
Jesy, whose life has been captured for a new Prime Video documentary, Life After Little Mix, became a mother for the first time last year to her twin girls, whom she shares with her ex-boyfriend, Zion.
The couple broke up four months after getting engaged, citing pressures in their relationship following their daughters’ diagnosis.
She lives in Brentwood, Essex, with her mother and sister, who continue to support her through her breakup and as she raises her babies.
The former X Factor star says there’s a misconception that she has professional help, but she clarified she is raising them herself, with her mother’s additional care.
She said: ‘My days in Little Mix prepared me for this, definitely. I had no sleep when I was in Little Mix.
‘Right now, it is a battle. My mum lives with me, I would be screwed without her, and we’re doing it us two.
‘I think a lot of people believe that I have help but I don’t. It’s just me and my mum and we’re not really sleeping to be completely honest, but we’re navigating it right now, we’re figuring it out.
‘It’s really tough but I just troop on, women are so resilient, no disrespect to men but I feel like we’re a whole different level.’
Jesy, whose life has been captured for a new Prime Video documentary, Life After Little Mix, became a mother for the first time last year to her twin girls, whom she shares with her ex Zion
Jesy endured a complicated pregnancy, during which she learned her daughters were monochorionic diamniotic (MCDA) identical twins and had Twin-to-Twin Transfusion Syndrome (TTTS), a rare condition in which both babies share a placenta.
Jesy was heartbroken months after their premature birth to discover her daughters had SMA Type 1, which doctors had not diagnosed until her mother noticed their legs weren’t moving as they should.
Jesy, who told the Daily Mail that she is taking each day as it comes, is now campaigning for all newborns to be tested for Spinal Muscular Atrophy at birth.
Early diagnosis is crucial, she explains, as a one-time infusion can significantly improve muscle development.
She said: ‘There was a point when I was told that the girls’ survival rate was next to nothing. I hate even saying it now because it makes me feel really sad.
‘I used to think what the f*** am I going to do if they’re not here and I have cameras following me – have I even really thought about this?’
Jesy described the moment the diagnosis was confirmed as world-shattering.
‘When the girls got their diagnosis, I felt like my whole world just fell apart,’ she said.
‘I felt like when they were born, my birth, me being on the antenatal ward, caring for them as premature babies, it was all so intense.
‘But I really felt like when I took them home that I was out of the trenches, I thought, thank God we’re out of it and I can finally enjoy motherhood. But then this happened, and I was like, what is my life?
‘So many things have happened to me. I remember turning to my mum and saying, “Someone up there is playing a game with me.”
‘I am just so grateful that they’re still here because it could have been a very, very different outcome. I just have to be grateful, and they’re just the most beautiful, strongest girls to raise.’
Jesy Nelson: Life After Little Mix is available on Prime Video on 13th February