Batten Fighters Forever 💙

Today, Andy and I joined other bereaved parents at a weekend hosted by the Batten Disease Family Association, a time to remember our precious children and share in their memory.

During today’s memorial service, the names of children who have died from Batten disease were read aloud, including our own beautiful Annabelle. Hearing her name was deeply emotional, and it meant so much to have her remembered alongside so many other dearly loved children.

Parents were invited to hang a star in their child’s memory and decorate a candle. Each one a tribute to a precious life, a love that never ends, and a child who will always be part of their family.

We also heard the heartbreaking news today that another little boy has gained his wings and is now free from this cruel disease. We are holding him and his family in our thoughts and sending them so much love.

Thank you to the BDFA for bringing families together and creating space for our children to be remembered.
Forever loved. Forever missed. Never forgotten.

#BattenFightersForever #BattenDisease #ForeverInOurHearts