New Chapter

Hi all, I have done a poor job of updating ourboysjourney again but want to share the latest around the Hawkins home.   Brandon and Jeremy are both at Cox Mill High School in Concord.  Brandon is a senior and Jeremy is a freshman.

Brandon goes in part time when he gets up usually between 9-10 am.  He has been able to participate in chess club which he likes.  He is almost completely blind and is slowing down physically, outside of the home he is almost 100% confined to his wheelchair.  We have noticed that he does have some dementia starting to creep in. And we have recently added equipment to help make bathroom tasks easier.  He still has amazing faith, he asked Wendy the other day if she prayed for him to be cured of Batten Disease and when she said yes he also wanted to know if she prayed for ALL kids with Batten Disease, not just him……..

Jeremy absolutely, positively enjoys everything about high school.  He has a full schedule including concert band, PE and occupational prep classes.  He participated at home games with the marching band and also got to march in the City of Concord holiday parade.  Jeremy has also enjoyed the Carolina Panthers success this year and has turned Thursday night, Sunday afternoon and evening and Monday night into all things football.  Jeremy has also declined a bit physically this year despite having growth spurt that made him several inches taller but almost 20 lbs lighter than he was last year.  We have worked with Dr’s and Physical Therapists to correct his pronated ankles and postural changes.

Recently we created a gofundme account (https://www.gofundme.com/ourboysjourney) to help with upcoming home modifications and the need to purchase a full size 2 wheelchair accessible van.  Also, if you would like to purchase a tshirt to support these needs visit https://www.bonfirefunds.com/org/supportbrandonandjeremy.  A portion of the proceeds for the shirts will come back to us.

Thanks for reading, I promise to do better at updating!!!  I will leave you with some recent pictures:

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About

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.

Posted in Batten Disease, prayer, Uncategorized

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