Former Little Mix star Jesy Nelson has detailed the heartbreaking reality of raising twins who have been diagnosed with Spinal Musical Atrophy (SMA).
The singer, whose daughters, Ocean Jade and Story Monroe were diagnosed with SMA, had admitted to not feeling maternal, before opening up about the huge shift in her life's purpose.
“I never wanted children, and then the universe gave me twins,” Nelson told Jamie Laing on the Great Company podcast. Nelson then spoke about a sudden feeling of delight, despite her shock when she found out she was pregnant: “I felt butterflies... it made me the person I’ve always wanted to be".
Nelson then detailed the trauma of giving birth the twins after 31 weeks, which led to a painful three month stay in hospital. She revealed that she was put to sleep for the delivery.
“Everything was taken from me. You wake up, they’re not there... they’re in a plastic box and you can’t touch them", she said.
Nelson went on to say that she noticed something was wrong with her babies after her mother noticed a lack of movement in their legs.
"They are like rag dolls", she said of the muscle wasting nature of their legs.
Jesy Nelson is now using her platform to raise awareness of SMA, and for it to be included in the newborn "heel prick" test.
While admitting that she has "good and bad days" where she feels like bursting into tears, Nelson did say that her girls give her superhuman strength.
“They’ve had to go through so much, and they’re still happy and smiling. What gives me the reason to be sad?”, she said.
SMA is a rare genetic condition which weakens muscles and can cause fatal respiratory failure, with Nelson noting that without treatment, many young children do not survive past age two. Her family were later referred to Great Ormond Street Hospital to begin the fight for treatment after receiving a 95% certain diagnosis via a Zoom call.
Earlier this month, Jesy Nelson said she felt a "duty of care" to raise awareness about this rare genetic condition.
"I almost feel like I’ve got a duty of care to raise awareness about it. A little part of me feels, I don’t know if this is even crazy to say this, it feels selfish to keep this to myself and not potentially save a child’s life. When you know that there is something that can be done about it and it is life changing to your child, that’s the part that I cannot accept, and that is why I’m going to shout to the rooftops about this", she told ITV's 'This Morning'.
