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!
🩵
