Doctors have told Jesy Nelson that her twin babies will probably “never be able to walk”.
The former Little Mix singer, 34, gave birth to twin daughters Ocean Jade Nelson-Foster and Story Monroe-Nelson-Foster in May following complications with her pregnancy. Announcing the birth, she shared photos of the twins together with their father, British rapper Zion Foster.
In an emotional video posted on Sunday (4 January), Nelson told fans that her babies have since been diagnosed with a muscular disease called spinal muscular atrophy (SMA) after her mother had noticed their legs “weren’t moving as much as they should be”.
“The girls have now been diagnosed with a severe muscle disease called SMA type one. For those of you who don’t know what SMA type one is, it is the most severe muscular disease that a baby can get,” said the singer.
Explaining the disease, she said: “It does affect every muscle in the body, down to legs, arms, breathing, swallowing.
“And essentially, what it does is, over time, it kills the muscle to the body, and if it’s not treated in time, your baby’s life expectancy will not make it past the age of two.”
Recalling her daughters’ assessment at Great Ormond Street hospital in London, Nelson said: “We were told that they will probably never be able to walk and never regain their neck strength, so they will be disabled.
“The best thing we can do right now is to get treatment and then just hope for the best. Thankfully the girls have had their treatment, which I’m so grateful for because if they don’t have it, they will die.”
Speaking about how their lives have changed since receiving the diagnosis, Nelson recalled “endless hospital visits” and having to learn how to put her babies on “breathing machines”.
“The reason I wanted to make this video was because the last three months have honestly been the most heartbreaking time of my life. I literally feel like my whole life has done a 360,” she added.
“I almost feel like I’m grieving the life I thought I was going to have with my children and I know I have to be grateful because at the end of the day, they’re still here and that’s the main thing.”
Nelson said she truly believes her daughters would “defy the odds” and “go on to do things that have never been done”.
On why she decided make the diagnosis public, Nelson said she wanted to raise awareness so that other parents could identify the condition as early as possible to make treatment more effective.
As stated by the NHS, symptoms include floppiness in the arms and legs, as well as movement problems.
“The main thing I want to get across is that the majority of this can be prevented if it is detected from birth and all it takes is a heel prick,” she said, referring to the newborn blood spot test.
As stated by the NHS, SMA is a rare genetic condition that can cause muscle weakness, including problems with breathing or swallowing, weak arms and legs, tremors, and bone and joint problems.
