Jessica’s DRPLA Journey

09/09/2026

💗 After a really tough week, today brought the turnaround we needed. Jessica woke up full of smiles and excitement — she was off to the theatre! 🎭

It's moments like these that remind us how much joy and resilience shine through, even after the hardest stretches. So proud of her. 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🩷

Sign the petition to support DRPLA research: https://www.change.org/p/support-research-to-cure-drpla

08/09/2026

A few of you have messaged asking if Jessica is okay, and I wanted to say thank you for thinking of her 💗

She's doing fine. Since having pneumonia she's been a lot more tired than usual, but tonight she's happy and settled in watching TV. Small, peaceful moments like this mean everything.

Thank you all for the love and support you continue to show her. If you haven't already, please consider signing and sharing the petition to support research into a cure:
🔗 https://www.change.org/p/support-research-to-cure-drpla

02/09/2026

Jessica came home from Sense today with the biggest smile on her face. 💗 Seeing her happy and settled after her session is a reminder of why we keep pushing for better understanding and support for those living with DRPLA.

If you haven’t already, please take a moment to sign and share our petition — every signature helps build momentum for research into a cure. 🔗 https://www.change.org/p/support-research-to-cure-drpla

30/08/2026

Please keep signing and sharing🩷

Support Research to Cure DRPLA

30/08/2026

💗✂️ SO PROUD OF JESSICA’S BROTHER, HARRY ✂️💗

We are incredibly proud of Harry, who has had his hair cut to support the amazing Little Princess Trust and has raised around £300! 🥹👏💗

The Little Princess Trust provides real-hair wigs, completely free of charge, to children and young people who have lost their own hair through cancer treatment and other conditions. They also help fund research into childhood cancers. 🎗️

Harry wanted to do something that could make a difference to another young person, and seeing him go through with it and raise around £300 has made us incredibly proud.

With everything our family goes through with Jessica and DRPLA, it means so much to see her brother showing such kindness and thinking about other children and families who are facing difficult times of their own. 💗

Harry, we are so proud of you. £300 raised and a very special haircut for a wonderful cause. ✂️💗

Thank you so much to everyone who sponsored him and supported him — it really does mean a lot. 🥰

29/08/2026

💗 Sometimes Willow knows before I even have to say a word… 🐾

As Jessica’s mum, there are so many parts of DRPLA that are incredibly difficult to watch.

One of them is seeing Jessica’s legs shake and tremble. It’s another reminder of what this cruel disease is doing to her body, and as her mum, there are moments when I wish more than anything that I could take it all away from her.

But then there’s Willow. 🐶💗

Whenever Jessica’s legs start shaking, Willow always seems to sense that something isn’t right. She comes close and stays near her, almost as if she’s saying, “I’m here.”

Nobody tells her to do it.
Jessica doesn’t have to ask.
Willow just knows. 🐾

Watching their bond is so beautiful. In a life where DRPLA has taken and changed so much, Willow gives Jessica something this disease can never touch — unconditional love, comfort and companionship.

As her mum, seeing Willow beside my girl during those difficult moments means more to me than I could ever put into words.

DRPLA may make Jessica’s legs shake…

but she never has to face those moments alone. 💗🐾

Jessica’s DRPLA Journey 🩷

27/08/2026

💗 Something new in DRPLA research 💗

There’s a treatment approach now being trialled for DRPLA that I wanted to share, because it’s a genuinely different kind of hope.

It’s called antisense oligonucleotide (A*O) therapy. In simple terms, DRPLA is caused by a fault in the ATN1 gene — an expanded, repeating section of DNA that leads the body to make a harmful protein. A*O therapy works by targeting that faulty genetic message directly, aiming to quieten it before it can do damage. A personalised version of this treatment is now in early-stage (Phase 1/2) human trials for people with a confirmed DRPLA diagnosis.

Alongside this, researchers in the US are also looking specifically at seizures in DRPLA — trying to understand why they happen and whether gene therapy could reduce them, with new funding now supporting deeper work into this with teams at Harvard.

None of this is a cure, and it’s very early days. But for a condition this rare, having active human trials and dedicated seizure research at all is huge. Every signature on the petition and every share helps keep the pressure on for more funding towards work like this. 💗

👉 Sign and share: https://www.change.org/p/support-research-to-cure-drpla

25/08/2026

Jessica’s back at Sense this week, and it’s lovely to see her settling back in 💗 It’s so good for her to be out and about, and the routine and connection there really do make a difference for her. 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🩷

https://www.change.org/p/support-research-to-cure-drpla

23/08/2026

Jessica went surfing again this week, and it was another wonderful outing for her. 💗 Moments like these mean so much — getting her out, active, and enjoying new experiences despite everything DRPLA brings.

Every bit of awareness helps push for more research into this rare condition. If you haven’t already, please consider signing and sharing our petition.

👉 https://www.change.org/p/support-research-to-cure-drpla

23/08/2026

Jessica’s brother is donating his hair to a wonderful charity called Little Princess Trust on the 29th August. Please support this charity by donating whatever you can.

https://www.facebook.com/share/1Bcd5btNdC/?mibextid=wwXIfr