Jesy Nelson chokes back tears as she speaks about twins heart-breaking health diagnosis on live TV
Jesy Nelson has emotionally opened up about her twins’ SMA1 diagnosis, admitting she is still struggling to accept their life-changing condition. The singer is now campaigning for earlier newborn screening, hoping to raise awareness and drive change for families facing the disease.
Jesy Nelson was overcome with emotion as she admitted she does not think she will ever be able to “accept” her twins’ devastating health diagnosis as she bravely opened up about their condition during a live TV appearance.
The former Little Mix star revealed earlier this week that her seven-month-old twins, Story and Ocean, whom she shares with fiancé Zion Foster, have been diagnosed with SMA1 – the most severe form of Spinal Muscular Atrophy.
Speaking on UK TV show This Morning, the 34-year-old pop star struggled to hold back tears as she described how dramatically her family’s life has changed.
Jesy said: “My house looks like a hospital. My hallway is filled with medical stuff. It’s crazy how you can go from one extreme to the next. Story is on a breathing machine at night because she’s not strong enough to breathe by herself, they have feeding tubes down their nose, and I’ve literally had to learn all this in the space of a few days since getting their diagnosis. It’s so much to deal with.”
Jesy with her fiance Zion Foster
Jesy admitted she is still coming to terms with the reality of caring for her children, admitting: “I’m still struggling with it, I’m not going to lie … I just want to be their mum, I don’t want to be a nurse. It’s hard. I don’t think I’ll ever get over it or accept it, but all I can do is try and do my best and try and make change.”
Although the twins have undergone gene therapy, Jesy explained that the condition is not reversible. While the treatment can prevent further muscle deterioration, it cannot restore what has already been lost.
She said: “They’ve had treatment now thank God, that that is a one-off infusion. That essentially puts the gene back in their body that they don’t have. It stops any of the muscles that are still working from dying. But any that have gone, you can’t regain those back.”
Jesy with her Little Mix bandmates Leigh-Anne Pinnock, Perrie Edwards and Jade Thirlwall at the MTV EMAs in 2018
Doctors have told the couple their daughters will “probably” never walk or regain full neck strength, and will likely require wheelchairs. Despite the prognosis, Jesy is determined to remain hopeful.
She said: “They are still smiling, they are still happy and they have each other and that’s the thing I’m so grateful for. They are going through this together and I think this is beautiful. All I can do is try my best to be there for them, give them positive energy, and keep doing physio… my whole life has completely changed.”
Jesy - who revealed her twins' diagnosis in an emotional Instagram video posted to her 9.7 million followers - is now campaigning for SMA to be included in routine newborn heel-prick screenings, believing her twins’ outcome could have been different with earlier detection.
She said: “When you know there is something that can be done about it, and it is life changing to your child, that’s the part I cannot accept. That is why I’m going to shout to the rooftops about this.”
