Team Dex

09/09/2026

In light of Duchenne Awareness Day on the 7th of Sept, I just wanted to put up an appreciation post for the incredible young man Dexter.

We are so proud of how he faces the hard days, the hospital appointments and his anxieties and yet everyday still manages to be a complete joy, always smiling, chatting, full of interesting facts, laughing.

He doesn't let his disability stop him, he still loves gaming, still loves to draw and create art, still plays piano beautifully.

As his shoulders get weaker and things get harder, he doesnt complain or moan, he accepts the new help he needs. He adapts and moves through life so gracefully and gratefully.

He truly is the most wonderful, caring, thoughtful human who doesn't let his condition define him in anyway. We are forever proud of you.

16/08/2026

Our dear friends Amanda Davie and Sherrol Curran are doing the Kilt Walk today to raise money for Duchenne UK !

Please donate if you can 💕

We appreciate you both so much for choosing to raise money in Dexter's honour.

It's been so difficult watching our child slowly loose the ability to do things he once found so easy over the last few years. We watch different potential treatments come and go and just long for a real treatment to come along that will help him be able to lead a long, happy life. 💜

I've found my own focus has shifted from fundraising to just learning to adjust to these changes, so I truly appreciate our friends picking up that mantle and helping us raise money ❤️❤️❤️

https://www.justgiving.com/fundraising/amandadavie-1772262557894?utm_medium=FR&utm_source=FB&utm_campaign=lc_frp_share_transaction_fundraiser_page_launched&fbclid=IwdGRjcATunVFwZG9mBWV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHrDH9GAf-0Ad0aHHcfU-haw1cjjh6PIursZZ2Vw37lUN9Pzy1DZSj2_3yaTZ_aem_iIMoo3vSXexqEdtM0TsrSg

https://www.justgiving.com/team/dexter?utm_medium=TE&utm_source=FB&fbclid=IwdGRjcATuoItwZG9mBWV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHqSpfBxTGmRtoVAHzeFrtmgCOM_x3pXzfklngWhlrUKuAd1-FUD1SUNNQZTR_aem_eDjlHjNB5SepXaJ-90ZWcg

Help Amanda Davie raise money to support Duchenne UK

08/09/2025

Yesterday was World Duchenne Awareness Day (7th of Sept). In light of that, I thought it was time for another update on our rare gem.

The biggest news is that Dexter changed to a brand new steriod called Vamorolone in the spring. This new steriod was in clinical testing when Dexter was diagnosed almost 9 years ago, and the results show it is as effective as the other steriods but with less side-effects. We had a bit of teething problems when he caught a bug the same week as starting, and we didn't know if it was a virus or the medicine change. But we tried again a few weeks later and he seems to be tolerating it really well. We still need to be mindful of weight gain, and unfortunately, he now gets a rash whenever his skin has contact with sunlight. So lots of sunscreen over the summer! But overall we are so pleased that he has access to this new medicine.

Duchenne UK was heavily involved with the funding for Vamorolone, so I'm feeling very grateful to all the Fundraisers who made it possible. It's been a long time now since we're done any fundraising ourselves, but I feel we should do something soon. So keep your eyes peeled for another Team Dex event soon.

Dexter has thankfully kept well all summer (except a small case of kidney stones 😢 which are more common in those on long-term steriods), and he loved his time off school.

This year we are focusing more on his creative pursuits, his piano, his art and animation. He is a very talented young man 🥰 He is also starting a YouTube channel to share his love of gaming so I will share his channel soon!

In a world that celebrates always being busy and successful and how much money you have. We are stepping back and focusing on resting, creating and having fun!

🩵

05/02/2025

Just realised I have not updated this page yet, many apologies. I am very off/on with social media.

Dexter had his MRI and we met with his cardiologist at the end of December. It couldn't have been better news and the cardiologist was very happy with the results. There is no damage or scaring from the event. Everything has pretty much gone back to exactly as it was before. A small part of his heart is working slightly slower than the rest but this is consistent with the progression of his disease and not a cause for concern. He has been on a heart medication since he was 5 years old and he started another one after his stay in hospital. The data shows that starting medication early to slow the damage is better than starting later.

We are so beyond relieved how everything worked out. We were very scared for a moment there. And we are so grateful to Dexter's wonderful team of doctors and nurses. They really care about him.

Until Dexter got the results we were very cautious of overworking him so he took a break from swimming and other activities. Over January he has been busy getting active and building up activity time, he has been back at his swimming, boxing with dad and doing yoga with mum! 😊🥰

26/11/2024

My wee brave grandson Dexter...so proud of him...think he handled all this better than me ,and his mum and dad X X💙💙💙

We had an eventful few days a couple of weeks ago. Took Dex to GP for some chest discomfort and got sent up to Ninewells. After a long wait and tests, we were told it was just indigestion and got sent home to get some Gaviscon.

The next day, the hospital calls, and they want us in right away because the cardiologist was worried about the ECG Dex got the day before. We stayed in Ninewells overnight for monitoring, and after more tests, they decided he needed a CT scan in Glasgow.

He got an ambulance over to Glasgow that night. By the next day, the ECG was looking better, his blood tests were improving, and the CT scan was thankfully clear. Doctors were really happy, and we were allowed to go home.

They didn't really know what had happened. There's been a couple of other case studies where this has happened before in boys with Duchenne. Same alarming symptoms that then seem to resolve themselves within a few days after treatment with additional steriods. We were really scared for a moment there, though.

He had an MRI of his heart today so hopefully, that comes back good in the next few weeks, and they are going to keep a closer eye on him for the next wee while.

He was looked after so well by all the doctors and nurses. They really are wonderful.

So Dexter has been and will be getting completely spoiled all the rest of the year and beyond. He was so incredibly brave through it all. He is so strong, it's amazing all he goes through, and he's still his bright, funny, happy self. He's just perfect.

26/11/2024

We had an eventful few days a couple of weeks ago. Took Dex to GP for some chest discomfort and got sent up to Ninewells. After a long wait and tests, we were told it was just indigestion and got sent home to get some Gaviscon.

The next day, the hospital calls, and they want us in right away because the cardiologist was worried about the ECG Dex got the day before. We stayed in Ninewells overnight for monitoring, and after more tests, they decided he needed a CT scan in Glasgow.

He got an ambulance over to Glasgow that night. By the next day, the ECG was looking better, his blood tests were improving, and the CT scan was thankfully clear. Doctors were really happy, and we were allowed to go home.

They didn't really know what had happened. There's been a couple of other case studies where this has happened before in boys with Duchenne. Same alarming symptoms that then seem to resolve themselves within a few days after treatment with additional steriods. We were really scared for a moment there, though.

He had an MRI of his heart today so hopefully, that comes back good in the next few weeks, and they are going to keep a closer eye on him for the next wee while.

He was looked after so well by all the doctors and nurses. They really are wonderful.

So Dexter has been and will be getting completely spoiled all the rest of the year and beyond. He was so incredibly brave through it all. He is so strong, it's amazing all he goes through, and he's still his bright, funny, happy self. He's just perfect.