Topics: Celebrity, Health, Parenting, Pregnancy, Jesy Nelson
Jesy Nelson has shared the heartbreaking news that her twin babies are unlikely to ever be able to walk after being diagnosed with a rare genetic condition.
The former Little Mix singer, 34, who gave birth to twins Ocean Jade and Story Monroe Nelson-Foster prematurely in May with fiancé Zion Foster, has revealed they have been diagnosed with SMA1 (spinal muscular atrophy).
As per the NHS, SMA 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.
The condition is grouped based on the age at which symptoms begin and how they affect sitting, standing and walking, which type 1 means it began in babies who are less than six months old.
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Jesy, who also spent much of her pregnancy in hospital due to rare complications before the twins were delivered at 31 weeks, broke down in tears as she shared the news in an Instagram video on Sunday (4 January).
The singer explained that it 'affects every muscle in the body down to legs, arms, breathing and swallowing' and 'essentially what it does over time is it kills the muscles in the body'.
She told her followers: "We were told that they’re probably never going to be able to walk, they probably will never regain their neck strength, so they will be disabled, and so the best thing we can do right now is to get them treatment, and then just hope for the best.
"Thankfully, the girls have had their treatment, which you know, I’m so grateful for because if they don’t have it, they will die.
"But it has just been endless, endless amounts of hospital appointments, I practically feel like the hospital has become my second home."
She said the diagnosis was made after her mother noticed the twins 'were not showing as much movement in their legs as they should be', and they later began to struggle with feeding.
Jesy recalled that when she first went to see doctors they told her 'don’t worry, it’s fine', but after the 'most gruelling three, four months, and endless appointments', they were eventually diagnosed with SMA1.
Emotional, she continued: "The reason I wanted to make this video was because the last few months has honestly been the most heartbreaking time of my life.
"I literally feel like my whole life has done a 360, I almost feel like I’m grieving a life that I thought I was going to have with my children, and I’ll have to be grateful because at the end of the day, they’re still here, and that’s the main thing, and they’ve had their treatment."
The star added: "And I truly believe that my girls will fight all the odds and, with the right help, they will fight this and go on to do things that have never been done."
Jesy bravely made her children’s diagnosis public as she wanted to raise awareness of the condition.
She said: "If anyone is watching this video and they think they see these signs in their child, then please, please take your child to the doctor, to the hospital, because time is of the essence, and your child will need treatment.
"And the quicker you get this, the better their life will be. Thank you for listening, guys."
Zion also posted a picture of the twins on Instagram, with the caption: "Still smiling through all the challenges. Daddy loves you so much."
