Mimi and Andrew Petty have set up Bertie’s Helpers to honour their son Bertie, who died of CLN1 Batten Disease, aged 4, a year ago. Bertie loved his bunny toys so Mimi and Andrew knew they had to use the Bertie Bunny in the logo!

“We want to be able to provide practical help to families with a child with Batten Disease by providing food gift deliveries, so that families can spend more precious time together and not have to worry about getting to the shops. The food delivery will be focused on high quality, quick meals and treats to make a difference at a difficult time,” says Mimi.

Having a family member with Batten disease is not easy but Bertie’s Helpers will focus on families who are facing a particularly challenging time. For example, they may be facing a marked deterioration in their child’s condition, be looking after their child at end of life, have a new diagnosis, be in hospital or other family challenge. The BDFA team, our nurse GOSH and other parents will be able to nominate a family for this extra special help. If you would like more information or a nomination form please contact Support at support@bdfa-uk.org.uk

We think this is a very special project that will have a hugely positive impact on the families it supports. We also think Mimi and Andrew are truly inspirational to think of others in this way at a very challenging time.