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Jesy Nelson struggling to 'accept' twins' devastating health condition

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Published in Entertainment News

Jesy Nelson doesn't think she will ever "accept" her twins' devastating health condition.

The former Little Mix singer revealed earlier this week that her and fiance Zion Foster's seven-month-old twins Story and Ocean had been diagnosed with SMA1 (Spinal Muscular Atrophy) - the most severe form of the progressive muscle-wasting disease - and she admitted she is still "struggling" to come to terms with their needs and challenges.

Speaking on UK TV show This Morning, she grew emotional as she 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.

"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 just want to reiterate that if this is caught from birth it's just life changing. 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 babies have undergone gene therapy, the 34-year-old star explained the condition isn't reversable and the tots will "probably" never walk or regain the strength in their necks, but she is trying to stay positive.

She said: "They've had treatment now thank God, that that is a one off infusion.

"And 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.

"So now it'll be a case of constant physio… we've been told they will probably never walk, probably never regain their neck strength, they are going to be in wheelchairs… but listen, there have been so many stories where parents have been told this and their children have gone on to do incredible things, so I believe you've just got to manifest this.

 

"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 is determined to campaign for SMA to be included in the list of conditions tested for in the heel prick screening after birth because of the fact the twins' outcome could have been different if it had been found earlier.

She said: "For me, if this was the cards that I was always going to get dealt and there was nothing I could do about it, then it's almost easier to accept, but 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, I cannot accept. And that is why I'm going to shout to the roof tops about this.

"It's alarming when you've got healthcare visitors coming around telling you they are fine and healthy and doing really well, and it took for my mum to say 'They don't move their legs how they should be moving'. My mum is a worrier and at the time, I thought that was just mum being mum, but then I thought 'Actually, they don't move them a lot'.

"Every day I started to notice movements less and less and less… and when I watch back videos of them now from when I came home from NICU to now, they are moving their legs and then week two, week three, it gets less and less and after a month it just stops.

"And that's how quick it is, and that is why it's so important and vital to get treatment from birth."


 

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