Raising Awareness of Batten Disease
When our darling daughters, Nicole and Jessica were both diagnosed with CLN2 Batten Disease in 2016, we made it our mission to raise awareness of this devastating condition.
We hope that by sharing our experiences of living with Battens, we can bring hope to others.
We are delighted to be hosting our sixth annual fundraising ball returning once again to
The Grand Hotel Gosforth Park in Newcastle and hosted by the sensational Steve Walls.
We are dedicating this year’s Sweetheart Ball to our brave and beautiful daughter Nicole, our darling girl who will be loved and adored forever.
What is Batten Disease
Is someone you know living with Batten Disease? Find out what support is available.
Get Involved
There are lots of ways you can help us in our mission to raise awareness, fundraise and to make a positive impact within the Batten Disease community. We would love to have your support.
News & Events
Keep up to date with the latest information on our events and how we are raising awareness.
Our Journey
We always knew we wanted children so we were ecstatic to welcome our first little baby boy Louis into the world in September 2010, then Nicole 18 months and a day after her big brother, then a little longer for our final addition to our family, Jessica.
We had surprises with each of the children, so when we had Louis, everyone used to say, oh it would be lovely have a girl then you are complete with one of each. But we have never felt like that, we were never hoping for a boy or girl, just healthy bundles of joy were a true blessing.
The minute we had Jessica, our family felt complete. We were so happy and blessed to be given our precious babies and we were going to look after them forever.
