Update

With ourboys 5k/10k coming up in a few weeks we would like to fill you in on what’s been going on around here.  We are blessed to have friends and family who help us and support us in many ways.  The mealtrain is a huge help to us, by generously offering to cook a meal for us it allows us to not worry about making something and be able to focus on other things around the house.  We have been prayed for countless times publicly and many more times privately, which is humbling and uplifting all at the same time.  We have also garnered much support from neighbors, school friends and teachers alike.  We could not have made it this far on this journey without you.

Now the not so good news.  Our boys are slowing down and changing.  Brandon continues to struggle making it a full day at school without having an episode of  some sort, we call them episodes because we are not sure they are seizures but they present in similar fashion.  Anyone who knows Brandon and his personality would not recognize him during these episodes as he punches and kicks while grunting and growling.  He sometimes is unsteady on his feet and spends much of his time outside of the home in his wheelchair.  He has not attended a full week of school since early in the school year and he talks virtually non stop about his favorite things.  Jeremy has also recently changed behaviors, as puberty sets in he has struggled with the typical adolescent growing pains which are completely magnified by his disease.  He worries about having a girlfriend and what others think of him and he continues to struggle with sleep or should we say lack of sleep.  He rarely sleeps more than a few hours overnight  and sometimes wakes up multiple times during the evening and still manages to not fall asleep or take naps during the day.  He has not attended school several times over the last few weeks and can’t seem to tell us why he doesn’t want to go.  Some nights, like tonight, his stutter gets so bad it is difficult to understand what he is trying to say and he physically bends over backwards to get words out.

Even with all of this going on these boys constantly amaze us with their love of life, smiles, laughter and tremendous personalities.  We are so blessed to be a part of their lives and share them with you.  

 

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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 10k, 5k, Batten Disease
4 comments on “Update
  1. Culture Bean says:

    Chris, you and your family are extraordinary. Your strength, your faith, your attitude. I am humbled and my heart is in my throat as I read your words. You all always in our prayers.

  2. Fallon parks says:

    It me Fallon I went to doreacademy a long time a go with Brandon I just wanted to say hi and I just wanted to make sure he doing OK I remember going to his birthday party we went bowling I hope you raise a lot of money at the 5k will you tell him I say hi I go to David w butler high school now he will all ways be my friend

    • chawk328 says:

      Hi Fallon! Thanks for saying Hello! That’s so nice of you to say he will always be your friend. Brandon talks about Dore Academy alot, he misses his friends from Dore.

      • Fallon parks says:

        I help him with math at dore in Mrs.Bonner class he could not see the math problems so I read them the problems and he would tell me the answer to them and I would write them down for them I loved helping him We are best friends I hope he doing good to day if he ever gets down or is sad am here for him you guys can text me or text me at 704-620-1794 if he ever up to may be one day I can say hi to him take care Brandon and I hope your brother doing good I had fun at your birthday party at the bowling alley thanks for being my friend you made me laugh and smile happy all most spring break brandon have fun off school OK hope to hear from you soon

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