A new initiative for 2024 - We will be sending surprise parcels to fellow siblings of children with Batten Disease to show them they are loved, appreciated and supported.

Since our journey with Batten Disease began, we have met and learnt about so many incredible children and youngsters affected by the condition. Some of these amazing children are diagnosed with Batten Disease and some are their incredible super siblings. We have spoken with siblings that have openly shared their stories as adults and are so grateful to them for their advice and insight. We have met and shared special times with teenage siblings, watched families grow with the addition of new younger siblings and over the years we have seen how strong, selfless and patient siblings are. We see this first hand with our middle son, Arthur and are in absolute awe of the incredible brother he is and continues to become. He adapts, he learns from experience and he is constantly making sure that life is as easy and as fun as possible for his brothers. He is an absolute rock for all of us and keeps us sane and grounded with his love for life and wicked sense of humour.

All of these Batten siblings we have had the pleasure of meeting and hearing about are all incredibly special and we as fellow parents, Arthur as a fellow sibling and Pedal4Memories as a community would like to celebrate, support, encourage and wrap those super siblings in our love and appreciation.

After lots of ideas and discussions, and the inspiration from a fellow batten family, we are proud and excited to launch…..

Arthur’s Gift!

This initiative allows families, friends and anyone, who knows a Batten sibling, to nominate them for a surprise delivery in the post. This can be as a reward, as recognition, as a support package when things are tough, or for any reason the nominator feels appropriate. xx

This initiative is, of course, for our whole batten community and as we are very aware, our bereaved siblings will always be affected by batten disease and we want them to be wrapped in our love and support too.

Siblings can be nominated more than once over time too, we know this journey is a rollercoaster and we want to be there all the way for our siblings.

This initiative will be funded by our Pedal4Memories Fundraising Project and so things will change slightly with how we share all money made. 50% will continue to support the boys memory making fund and future proofing and 50% will be shared between the fabulous work at the BDFA and supporting Arthur’s Gift.

We will also have an Amazon wish list that anyone can access and purchase a gift to go into our Arthur’s Gift stock room ready for packaging up into a surprise delivery.

Arthur is very excited and extremely proud to be a big part of this new chapter of our journey and will be involved in choosing gifts, wrapping parcels and sending these to his fellow siblings.