Merry Christmas 2015

I have struggled to come up with the right words for this post all day long.  2015 has been a challenging year in our home for a variety of reasons, most of them completely out of our control.  Yet the overwhelming feeling in our hearts right now is gratitude.  Despite all the challenges it has been an incredible year, full of great memories and milestones. We have our faith, our family and an incredible community(both near and far) around us.  We don’t know what the future holds but we know that we will make it through.

Merry Christmas to you and yours, please hold your loved ones tight when you can, tell them you love them every chance that you have and have a wonderful 2016!!!!!!!

Chris, Wendy, Brandon and Jeremy

 

Posted in Uncategorized

Punch in the gut

So today was hard.  My Batten family, I am sure, can relate to what I am about to say.  After Brandon turned 18 we had to apply for Social Security Disability for him as an adult.  Part of that process required a visit to an eye doctor, at their expense,  to confirm his current visual acuity.  We knew going into this appointment today that he didn’t have any vision but we hadn’t put him through an eye exam in 7-9 years.  Keep in mind that before we got a confirmed Batten diagnosis he went through a variety of eye related doctor appointments and tests.  ERG, EEG, eye exercises, optometrists, ophthalmologists, you name it.  Imagine you are losing your eyesight as a 6-7 year old and you don’t know why, then have your eyes dilated for an exam.  Not only do those drops kinda sting but then the vision that you do have is out of whack for several hours.  Fast forward to today and we had to dilate his eyes for the doctor to see the back of the eyes.  I had to help the nurse to keep his eyes open enough to get the drops into his eyes and then we sat back and waited for them to work.   The doctor came back in and the first questions she asked was what type of Batten Disease he had 1,2 or 3.   The struggle is real for families with rare diseases, she obviously was not familiar with Juvenile Batten Disease, which is NCL3, had just looked up Batten Disease and needed clarification.  Then she took a look into his eyes and started quoting to the nurse who was taking notes.  “Severe optic nerve atrophy, significant pigmentation damage and no macular definition.”   Translation:  he’s blind.

My logical brain knew this was coming but my heart took that punch.  Square in the chest, sucked the wind right out of both of us.

Good thing this was the end of the appointment because the rest of the visit and what she talked about was a blur.

 

 

 

Posted in Batten Disease, blind, Uncategorized

New Chapter

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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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Posted in Batten Disease, prayer, Uncategorized

Jeremy’s First Football Game with marching band

Brandon and Jeremy both are at Cox Mill High School this year, Brandon is in 12th grade and Jeremy is in 9th grade.  Jeremy is excited to take part on a limited basis in marching band.  He loves being a part of the band, here is a video and a few snap shots from parent preview and the first football game.  More to come!

https://www.facebook.com/media/set/?set=a.10206771582501677&type=1&l=4035347f2b

Posted in Uncategorized

2014 Conference Video

Posted in Uncategorized

2014 Race results

2014 Race results

2014 Race results are available at this link! 

Posted in Uncategorized

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.  

 

Posted in 10k, 5k, Batten Disease
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