Source : PERTHNOW NEWS
Jesy Nelson not long has the means to create music.
The original Little Mix song is stepping down from her professional life to concentrate on Ocean and Story, her eight-month-old twins, and to plan for testing at conception.
SMA1 ( Spinal Muscular Atrophy Type 1 ), a severe form of the uncommon, progressive, and unreversible genetic condition that her daughters have.
Jesy, who recently broke up with her daughters ‘ parents, Zion Foster, told Amanda Holden and Jamie Theakston on Heart FM’s Breakfast program, that she would never say “never say not to songs.”” Look talk, I’d never say never to music, but for me, my girls are my main focus,” she said.
They are my main concern and my heart, and I want to keep fighting for them, changing this heel prick test, and strengthening them, that’s my main goal.
” Because that’s going to affect their future,” she said. My main focus is on that at the moment.
The 34-year-old actress recently admitted that she is” struggling” to adapt to her life right now because she is “nurse” to both her daughters and their mother.
She became empathetic when she said on the UK TV program This Morning:” My house looks like a hospital. Medical supplies are all over my hallway. How you can go from one extreme to the next is incredible.
Because she can’t breathe alone, they have feeding tubes down their nose, and I have literally had to learn all of this in the short span of a few days since getting their diagnosis. Story is on a breathing machine at night because she can’t breathe by herself. There is so much to deal with.
I’m still having trouble with it, I’m not going to lie; I just want to be their mother and not a nurse. It’s challenging. I just want to point out that if something is discovered right away, it will change people forever. I don’t believe I’ll ever move past it or accept it, but all I can do is give it my all and try to make things right.”
Jesy explained that the condition isn’t reversable and that the tots will “probably” never walk or regain the strength in their necks, but she is trying to stay positive despite the babies having undergone gene therapy.
She continued,” They’ve had treatment now thank God, that that is a one-off infusion.
And that basically brings the gene that they don’t have back into their body. Any muscles that are still active are prevented from dying. However, any that have gone cannot be recovered.
” So it’ll be a case of constant physio,” the statement read,” We’ve been told they will probably never walk, probably never regain their neck strength, they will be in wheelchairs,” but listen, there are so many examples of parents being told this and their children have gone on to do incredible things, so I think you’ve got to manifest this.
They still have each other, are still happy, and they are all smiling, which is what I’m so thankful for. I think it’s beautiful that they are going through this together.
My entire life has completely changed, according to the statement,” all I can do is try my best to be there for them, give them positive energy, and keep doing physio.”