Jessica’s DRPLA Journey

Jessica’s DRPLA Journey This is Jessica she is 21 years old and is terminally ill. She was born a healthy little girl but now she has lost all ability
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She was recently diagnosed with DRPLA (Dentatorubral-Pallidoluysian Atrophy) which is a rare gene neurolgical brain disorder.

Sorry that I haven’t posted any updates on Jessica over the last couple of days, it’s not been easy for her. Last night ...
18/06/2026

Sorry that I haven’t posted any updates on Jessica over the last couple of days, it’s not been easy for her. Last night she became unwell and and was in extreme pain. They did bloods and an x-ray and they’ve come back good but unfortunately DRPLA has progressed quite rapidly. There is nothing else the hospital can do so it’s been decided that she should come home to have care and be with her family. We are hoping that she can keep on fighting this disease but pneumonia has made her extremely weak. We can only hope that she can get through this. Please keep following and sharing Jessica’s DRPLA Journey and if you can sign and share her petition it would mean the world to us. It’s pinned below 🩷

https://www.change.org/p/support-research-to-cure-drpla?fbclid=IwdGRjcASg85lleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEeuqEbyzYwjntHvBK8hn4ns8Csu5t08ywgK0o58aeHJ90yrGykRZXB_Pf1KgM_aem_oB28TfKVXvBI4AWtI9oFrw

15/06/2026

Jessica is still weak,however she’s getting stronger and she’s started to smile so that’s a good thing. Hopefully she will be coming home at the end of the week🩷

Jessica has improved but she is still fighting. I can’t believe how tough she is, she’s a true inspiration. If you haven...
13/06/2026

Jessica has improved but she is still fighting. I can’t believe how tough she is, she’s a true inspiration. If you haven’t already signed her petition can you please sign and share it. We are so desperate to get her on the U.S trial and if you can follow and share her page so more people know about DRPLA that would be great. Not one doctor in the hospital has heard of DRPLA so I need to raise as much awareness as possible. The petition is pinned below🩷

https://www.change.org/p/support-research-to-cure-drpla?fbclid=IwdGRjcASaQENleHRuA2FlbQIxMQBzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEe53Gr9D5l-bw9nz2waqI29b2yooMX_xRyzzlk2kFVPRkT6611A734mcXRxeU_aem_EffkZs_BGOFw4-UHFXg0-w

Nearly a week in hospital and she’s still fighting, I can’t believe how strong she is. Today has been a good day and the...
12/06/2026

Nearly a week in hospital and she’s still fighting, I can’t believe how strong she is. Today has been a good day and the doctor is optimistic. Come on Jessica you can do this 🩷💪🩷

Jessica is still fighting this cruel disease, unfortunately though she has developed an infection in her blood. The doct...
11/06/2026

Jessica is still fighting this cruel disease, unfortunately though she has developed an infection in her blood. The doctor has put Jessica on the strongest antibiotics and have told us that if she doesn’t improve in 48-72 hours then there is nothing else they can do. Jessica is strong though so we are hoping that she will get through this 🩷

So Jessica has had to be put on another combination of antibiotics as the ones they have already tried are not working. ...
10/06/2026

So Jessica has had to be put on another combination of antibiotics as the ones they have already tried are not working. She is fighting it with everything she has, unfortunately her oxygen levels keep dropping so it’s going to be hit and miss if she makes it. A new team of respiratory doctors are coming to see her tomorrow so hopefully they can help. I will keep you updated when we have more news🩷

Sorry for only now giving an update on Jessica, the truth is the last 24 hours has been very turbulent. The three antibi...
09/06/2026

Sorry for only now giving an update on Jessica, the truth is the last 24 hours has been very turbulent. The three antibiotics that Jessica was put on haven’t worked as quick as the doctors would have liked so they have tweaked them to see if she improves. The next 24 hours are going to be vital for Jessica and I’m hoping and praying she will get through this. I want to be as transparent as possible with you all because when I started this page it was to bring as much awareness as possible of DRPLA and the last few days have been horrendous for Jessica. The pain she’s been in has been awful, to the point where morphine hasn’t even helped. This disease is frightening and I wouldn’t wish it on anyone. I have read her all your lovely messages and comments so please keep them coming and I will update you all again when I have more news🩷

Thanks everyone for all your lovely messages and comments I just thought I’d let you know that Jessica is still in hospi...
08/06/2026

Thanks everyone for all your lovely messages and comments I just thought I’d let you know that Jessica is still in hospital. She has been put on three kinds of antibiotics and morphine for the pain and she’s fighting it with everything she has. She’s a tough little girl and we’re hoping that she will get through this🩷

Hi all, I just wanted to put a quick post up to say that Jessica became quite poorly yesterday and she was rushed to hos...
07/06/2026

Hi all, I just wanted to put a quick post up to say that Jessica became quite poorly yesterday and she was rushed to hospital where tests have come back showing she is suffering with Pneumonia and a chest infection. I will keep you all updated as soon as we know more 🩷

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