Jesy Nelson reveals her children are disabled and may never walk

[Gimme More 35,584]

Jesy gave birth last year two identical twin girls, it was a difficult pregnancy in which they both nearly died.

She has now revealed that the twins have been  diagnosed with a condition called SMA Type 1, or Werdnig-Hoffmann disease, the most severe form of Spinal Muscular Atrophy.

The lifelong disabling condition causes dramatic muscle weakness with severe breathing and swallowing issues and is commonly fatal without radical treatment and will likely die by 2 years old.

Jesy opened up about how the disease “overtime, it kills the muscles in the body”.

Jesy then recalled the “very rapid process” of her baby girls getting treated.

“Me and Zion had to sign lots of forms before they even got their diagnosis,” she added.

“When they assessed the girls at Great Ormond Street, we were told that they will probably never be able to walk.

“They probably will never regain their neck strength, so they will be disabled.

“So the best thing we can do right now is get them treatment and just hope for the best.”

Jesy then revealed that the girls, now seven and a half months old, have had their treatment, which she is “so grateful for, because if they don’t have it, they will die”.

“I feel like I’ve almost had to become a nurse in the space of two weeks,” Jesy added, explaining how she has had to put her daughters on breathing machines.

“The reason I wanted to make this video was because, the last few months has honestly been the most heartbreaking time of my life. I feel like my whole life has done a 360.

“I’m grieving a life I thought I was going to have with my children,” she emotionally said, before acknowledging that she is grateful to have them.

“I truly believe that my girls will defy all odds. And with the right help, they will fight this, and go on to do things that have never been done.”

 

[LunaUniverse 4,186]

I love how she’s choosing to be optimistic and hopeful for their kids, and yet still honest about her feelings. I hear stories of parents with severely disabled children only focus on their grief and treat their child like a burden, so it’s refreshing to hear she loves her girls enough to believe 

[Gimme More 35,584]

28 minutes ago, LunaUniverse said:

I love how she’s choosing to be optimistic and hopeful for their kids, and yet still honest about her feelings. I hear stories of parents with severely disabled children only focus on their grief and treat their child like a burden, so it’s refreshing to hear she loves her girls enough to believe 

Yeah I love that she is being optimistic.

It is breaking my heart reading the comments on her post from parents saying their children defied the odds for 12/13 years. So young  I hope Jesy's children have long lives and atleast surpass 2  

[ModernEcstasy 9,123]

This woman has been through so much and this is breaking my heart, so I can’t begin to imagine how she must feel!

I pray these babies have a happy life, however long they have on this earth. 

[Bronco 15,190]

I really hope behind the scenes this may act as a catalyst to get the girls all speaking again. **** a reunion etc. I just want her to have that support network to lean on. 

[Sarah H 3,904]

Oh man, life can be so cruel. Poor Jesy. 

[Gagasdisease 274]

God, I feel so bad for her... I truly hope people online give her a break for good 

Edited Sunday at 04:47 PM by Gagasdisease

[gagzus 16,529]

As much as I don’t like some of her choices, I can’t imagine being a parent and having to deal with something like this. Hopefully she has a good support system for herself and her children too

[Gaby15 14,428]

I hope the twins get better, since she wrote that they received the treatment.

A few years ago, SMA was a big social topic in my country, people organized a fundraiser for the treatment of a baby boy (it cost about 2 M USD) who would have died otherwise. Today he can walk with help and go to school.

Since then, free SMA test have been introduced for newborns (before the first symptoms appear), and social security fully covers the treatment of children diagnosed with SMA.

[Lisbeth Salander 296]

This is probably every parents’ nightmare. After so many difficulties to get a child… I have no words. I hope they, as a couple, are able to support each other and that they have good support systems. 

[timdrake 1,287]

Gosh that's heartbreaking, really hoping her family will have the resources they need to have a good, happy life.

 

(Unimportant, but from now on I'm retiring from teasing her about bad career moves. Genuinely wishing her the best.)

[Gimme More 35,584]

Jesy posted a video from hospital thanking everyone for the overwhelming support. She said she will be starting a petition and will fight to make change happen as she is so determined. She will be on This Morning tomorrow to discuss SMA Type 1 to raise awareness.

https://x.com/JesyNelson_stan/status/2008602079095648568?ref_src=twsrc^tfw|twcamp^tweetembed|twterm^2008602079095648568|twgr^2f8209de25fd8829cc15d73f20dd7743df7a6eb3|twcon^s1_c10&ref_url=https%3A%2F%2Fwww.buzzjack.com%2Findex.php%3Fapp%3Dcoremodule%3Dsystemcontroller%3Dembedurl%3Dhttps%3A%2F%2Fx.com%2Fjesynelson_stan%2Fstatus%2F2008602079095648568%3Fs%3D46

[Wet Fire 7,995]

So devastating  But the way she is determined to face the obstacles shows what a great parent she is. Hope she finds all the courage in the world!