Singer Jesy Nelson shared an update on her twin daughters as they’re set to have an operation
Jesy Nelson has admitted to feeling ‘terrified’ as she revealed her twin daughters were set to undergo an operation as they continue to face their heartbreaking diagnosis.
The former Little Mix star revealed in January that her twin daughters, Ocean Jade and Story Monoroe, both aged 15 months, had been diagnosed with the rare condition spinal muscular atrophy (SMA), more specifically SMA Type 1, a rare genetic condition that causes progressive muscle weakness.
Jesy has kept fans updated on life with Ocean and Story, whom she shares with ex-fiance Zion Foster, since their diagnosis and has been seen fighting to change UK newborn screening laws.
The Department of Health were seen confirming last month that the national newborn screening programme for SMA will be rolled out across England as part of an evaluation programme from the end of this year, which means hundreds of thousands of babies will be screened as part of the simple heel prick blood test shortly after birth.
But it was on Thursday (August 6) that Jesy revealed the babies were having their nasogastric (NG) tubes removed on Friday (August 7). A nasogastric tube is a feeding tube passed through the nose, down the throat, and into the stomach, which delivers nutrients, fluids, and medications when a baby is unable to swallow unaided.
Sharing a picture of her little girls, Jesy wrote on Instagram: “Today is the last day of my baby girls having their ng tubes on their faces, as terrified as I am about them having their operation tomorrow, I cannot wait to finally see their faces again and see their little dimples that are always hidden under these plasters.”
She added: “I’ve honestly forgotten what it feels like to cuddle them and not worry about pulling their tube out of their nose or plasters off their faces. It really is the littlest things we take for granted as parents.”
It comes after doctors warned Jesy Ocean and Story were not responding to treatment the way they had hoped during their most recent three-month review at Great Ormond Street’s Children’s Hospital.
Jesy told The Sun: “Unfortunately, some of the numbers have gone down. We had a long discussion and there’s a possibility they may have to go back on treatment, which is just heartbreaking. I constantly battle between manifesting they’re going to defy the odds and trying to come to accept that that may not happen.
“It’s a really weird position to be in because you you think ‘well, if that doesn’t happen, am I just going to feel heartbroken for the rest of my life?’ Then you worry, if I accept it, am I also manifesting that?”
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