Peter doesn't let his lack of vision or other struggles stop him from doing hard things or having adventures.  He has his yellow belt in karate.  He is learning to snow ski.  He loves Lego, listening to stories and books, and 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 hosted a blind buddy run for Team Peter, where teams of two will go a lap in Peter's “shoes”.  One team member was “blind”/blindfolded and the other will be the guide/eyes. 

Even though we do not know what the future will look like we still talk about Peter's 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. 

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Heath Family Blog
You can read more about the Heath Fam from Beth's perspective by checking out her blog, Marriage, Ministry, Motherhood and, Managing a Disability

  Keep up with Team Peter on their Facebook page.  

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