Thanks for taking the time to visit our JustGiving page in memory of Rob. We are organising a Lancashire Night - thanks to the fab Yvonne Wright, our local councillor. 

To be told you will lose your child is the worst thing that can happen to a parent, it’s devastating, your whole world falls apart and it’s hard to stop thinking about the non-future. 

But you have to live in the present and celebrate every time you hug, hold their hand, share a joke or just be with them. 

We made a pact that when we got to the end of the road we would look back and have no regrets. We have none, we all did our best. 

There is hope though, which although too late for our Robert, shines for some children with other variants of this dreadful disease, and all the families who need support which is offered by the BDFA. Support as they go through diagnosis, at diagnosis, negotiating the complex progression of the disease, support to ensure everyone gets the farewell they want and deserve, plus ongoing support for bereaved families. 

Donating to the BDFA will also mean that research into Batten Disease can be funded, and the hope can continue.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.