Hello all, first of all wanting to express many many thanks to those who have donated recently that I may have missed and to those who have shared this campaign or contributed multiple times. We are back from Tour with a few shows left for the year and playing catch up with multiple things so please forgive the delay in updates.

Thank you to everyone for coming to the Frances Changed My Life Fundraiser on Saturday 16th September. Thank you to all the vendors there too, what a really cool way to come together. We are so grateful for all the help in figuring out options for our child and others like Frances. It really means a lot. It will also help with the next phases of research, that will benefit the other kids and patients diagnosed with this disease. So little is understood about Dhdds that we need to change that. Every day we try to make more progress.

It has been a month since we shared this heartbreaking world we entered a few years ago. Your messages and support have really been a catalyst into a brighter more positive existence.

This is the hardest thing we’ve ever had to experience or talk about. Your support means the absolute world to us.

We will do our best to post any updates and progress. We are eternally grateful.