In May of 2022 we learned that our then 6-year-old son Peter had Batten Disease CLN3, a disease we had no idea existed. Peter was and continues to be an active, curious, funny, kind, mischievous boy, with big dreams for the future. Peter has not allowed his blindness or the other struggles Batten to keep him from his dream of being a soccer player, a karate star, and an author!  He has published a children’s book called The Adventure of Marshmallow and Peter about the adventures he and his white cane (that he named marshmallow) have together.

He recently received his yellow belt in karate.  He loves Lego, listening to stories and books, family snuggles, and he loves to be outside.  In June of 2022 Jacob joined our family and he is a carrier for CLN3.  We try hard to live each day focused on being present in the moment and not allowing CLN3 and its effects on Peter and our family to steal our joy.

Each year on the anniversary of Peter’s diagnosis we hope to do something to celebrate who Peter is and to bring together the people on “Team Peter.”  In 2023 we hosted a book signing of his newly published book.  In 2024 we hope to host a blind buddy run for Team Peter, where teams of two will go a mile in Peters “shoes”.  One team member will be “blind” and the other will be the guide/eyes. 

Even though we do not know what the future will look like we still talk about Peters dream for the future.  We are hopeful that a treatment or better yet a cure will be found so Peter’s dream can become a reality. 



Funds raised will be used for the BDSRA to do the research to help find a treatment or cure for Batten Disease, so that all families affected by Batten can look towards the future with hope instead of fear. 
     
You can read more about the Heath Fam from Beth's perspective by checking out her blog, Marriage, Ministry, Motherhood and, Managing a Disability

     

Heath Fam in the News!

Loudonville boy publishes book about adventures with his white cane.