This was posted to her instagram stories.
Jesy Nelson revealed her twins' diagonsis on January 2026 on instagram.
Quote taken from a BBC article:
Nelson said in an Instagram video that the girls have Spinal Muscular Atrophy (SMA), which she described as the "most severe muscular disease".
"It does affect every muscle in the body, down to legs, arms, breathing, swallowing," she said.
In the video, she explained that her daughters had not been showing as much movement in their legs as they should be, and were struggling to feed properly.
"Essentially, what it does is, over time, it kills the muscles 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."
Posted by ayana_banana
14 Comments
How terrible. I feel like she canāt catch a break š
Damn, she is going through it. I really hope her car is found.
she has had such a rough go of it these past few years. i feel terrible for her. no one deserves this
Thats horrible. I hope itās found soon and if not I hope she is able to replace the medical equipment without problems.
She can’t catch a break and this hurts my heart. Prayers that she can get the equipment back or easily replace it. People can be monsters.
š I hope they at least return the medical equipment, fuck. Probably not, sigh.
She really cannot catch a break.
She just catching stray after stray this year š
Are the police helpful about this in the UK? Hoping her babies are well.
Jeeeez, thatās terrible, I hope she gets a break and her car and the supplies are returned to her
poor babies š I hope they get the equipment they need back soon
Having to care for not one but two children with a devastating disease is so difficult..I canāt even imagine. Iām glad the babies have a mama who can afford to get them the best equipment. So sad. I had no idea.Ā
I teared reading this and had to come back to this post later. As someone with SMA, a lesser severe type but Iām a full time wheelchair user, suddenly losing equipment isnāt just *oh no*. Itās how am I going to get in bed. Itās how am I going to go to the bathroom. Its how am I going to breathe. Itās how am I going to eat. Its terrifying to lose a life saving machine.
I have never had my equipment stolen but my Hoyer lift has broken with me in it so that Iāve completely dropped to the floor. Takes weeks to get a new one so I was sleeping in my chair and having my caregiver plus a neighbor help me transfer to the bathroom.
My wheelchairs battery completely gave out once so I called the company I worked with that does my maintenance. They told me emergencies were 911 issues and not something they did. But I could schedule an appointment! My dad had to buy me a recliner and bring it to my apartment.
Delta airline completely destroyed my wheelchair flying to from LAX to Austin, Texas. Wheelchairs are stored under planes with all the luggage and animals and whatever else. They donāt strap it down. They donāt secure any part of it. They brought it to me to get into from the plane and one of the arm rests was dangling off and the battery was lost for an hour.
On the return flight LAX actually lost my wheelchair. I sat in the runway on one of those airport wheelchairs for an hour and a half before they found it and got it to me. I want to travel the world. I wonāt go anywhere I canāt drive (yes I drive a car) to until I can drive my wheelchair onto the plane. Itās supposedly in the works.
I work in an industry that handles replacement of these types of devices under insurance. It can take MONTHS to replace them bc they are highly customized. Itās kind of nuts that these companies donāt have any way to expedite the process, but with highly custom stuff they canāt