Hi! I'm Rob. I'm Dad to two wonderful children, Elliott (or Elly Welly as we call him) and Faye. 

In October 2020, our beautiful Elly Welly was diagnosed with the ultra rare life limiting condition known as CLN2 Battens Disease. Whilst the diagnosis will always be devastating, we cherish every day he's with us, and make the most of everyday.

I stream on Twitch (or try to) every Tuesday night with friends to raise awareness and donations about Batten Disease and its impact on families. As part of the BDFA's "13 for 13" challenge (as there are 13 types of Batten disease) I'm doing a special 13 hour stream attempting to get 13 Fortnite Wins. Come see me fail miserably (!!!) and have a laugh with us...

You can watch the whole thing at this link below (and also donate there if you wish).

https://tiltify.com/@batten-royale/bdfa-battens-day-2022-13-wins-in-13-hours

The BDFA provides support, advocacy and information to children and young people with Batten disease and supports their whole family. On 9th June 2021 it is international Batten Disease Awareness Day and the BDFA have a week of awareness events planned! We are also seeking to raise funds for the continued work of the BDFA and so we are launching this exciting event for anyone to get involved in and support.