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.

Edited Tuesday at 18:471 day by Slayer

@Slayer if you DM Jesy she should reach out to David Fajgenbaum and ask if the disease is on his list. He basically cured himself of his own complex chronic illness thanks to AI and is trying to figure out cures and treatments for other diseases too. There's alot of people following his work. One of my friends has ME/CFS (very severe) and is excited about what he could do and he's never had that enthusiasm for any other researcher before.

David Fajgenbaum - CDCN Leadership

Edited Tuesday at 18:581 day by shadow2009

18 minutes ago, shadow2009 said:

@Slayer if you DM Jesy she should reach out to David Fajgenbaum and ask if the disease is on his list. He basically cured himself of his own complex chronic illness thanks to AI and is trying to figure out cures and treatments for other diseases too. There's alot of people following his work. One of my friends has ME/CFS (very severe) and is excited about what he could do and he's never had that enthusiasm for any other researcher before.

David Fajgenbaum - CDCN Leadership

I last spoke to her in October, however, Jesy follows me on TikTok so I can try on there too in an extra effort for her to see this information!

Edited Tuesday at 19:231 day by Slayer

Bless her, this is such awful news

I started to tear up when she did. She is so passionate, she knows what she is talking about. I’m so proud of her. I can’t believe how much she’s having to do!

this part hit me in the feels!

She said she’s made a petition and it’s currently under review. One of daughters has to be hooked to a breathing machine every night and her house is full of medical equipment.

The health Secretary shared her post, so something might be done. Such sad story