Our tree at Camp New Hope

is getting bigger.  We planted it there to memorialize our time there and Randy has taken it and run with it.  They will be creating the Garden of Hope around that tree.  I took the boys up yesterday for a quick visit while Wendy was on a girls weekend to the beach.  The tree is blooming and I was very proud of Jeremy.  When Wendy got home today he told her that he had prayed to God to cure his eyes and his Batten Disease and Brandon piped up and said that he did too.  This was Commanche’s first visit and all five of us were exhausted by today.  Quick prayer out to the Kerner family who laid Daniel to rest today.  Damn I hate Batten Disease.


I am married to Wendy and dad to two boys Brandon and Jeremy with Juvenile Batten Disease, a fatal neurodegenerative childhood disorder. I am also active with the Batten Disease Support and Research Association.

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One comment on “Our tree at Camp New Hope
  1. anne pierini says:

    God bless your family. I will always pray for you.

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