Brock's Batten 

 

April 9, 2007,

We were blessed with the best gift ever.  It’s a boy!   Not knowing the gender of the baby and having two girls already, we were over joyed with the news.  Brock was a happy, healthy and handsome baby boy.  He hit all his milestones.  He walked, talked and was potty trained.  He was saying full sentences and developing his own little character personality.  He was comical and would always having us laughing.  Brock would get the best of his sisters with ending every sentence with the word DUH.  He loved to fish with his dad and ride motorcycles and four wheelers.  He would climb fences and trees.  He would help his mom cook, do dishes and fold laundry.  He was the best little helper and your typical little boy. Brocks love for horses began at early age. Every morning Brock would ask if he could ride.  His partner in crime was named Joe.  He loves being a cowboy, watching bulls and going to rodeos.  Brock rode bare back ponies at the age of 5 in The Little Britches Rodeo of Wisconsin.   He loved it!  If he wasn’t on horseback, you would find Brock swinging a rope.

 October of 2013 Brocks’ teacher noticed that one day he would say and recognize the alphabet and numbers and the next day he couldn’t do it.  At home, we noticed he was falling more often than a boy his age should be. We found a tutor to help Brock at home.  It seemed to help a little.  We thought the more repetition the better.  Then I took him to see a psychologist.  He diagnosed Brock with Auditory Processing Disorder. Then on May 1, 2014 Brock had his first grand-mal seizure.  When we arrived at the hospital his temperature was 104.7.  After hours of being there, the doctors determined that this was a febrile seizure.  June 26th Brock had not one but two grand-mal seizures back to back.  Again, we ended up at the emergency room where they admitted Brock.  He had an MRI and blood work taken.  They diagnosed him with Epilepsy July 2014.  We were then referred to UW Children’s Hospital in Madison, WI.  Brock had a 24-hour EEG done to see what was causing the seizures.  No luck.  EEG was normal.  They put him on a low dose of Keppra, to help with seizure control.  October of 2014, doctors at UW did a panel of blood work to see if they could determine a diagnosis for Brock.  All tests came back negative.  The genetic doctor then suggested we do a skin biopsy.  It was a good six months of getting this type of testing approved through insurance.  Meanwhile, Brock suffered another seizure.  This one was eyes rolled and his muscles were tight.  It was then June 2015, Brock had the skin biopsy done.  

            July 2015, we received the results.  Brock tested positive and was diagnosed with Batten Disease CLN8 variant.  The doctor said this was a rare and fatal autosomal disease with no cure or treatment.  He would only live into his early teens.  Our lives have been turned upside!  Our journey with this dreaded disease had begun.  Brock was doing really good from 2015 until October 2017.  Brock starting having focal seizures.  He had a total of 4 seizures in a week and a half.  Brock was put on another medicine called Onfi and the doctor increased his dose of Keppra.  Along with trying to figure out why Brock was having seizures, we were also taking him to an ophthalmologist for his eye tests.  He is night blind and has minimal day time vision.  

            As of 2019, Brock is hanging in there.  We have seen a decline in Brocks eyesight, speech and mobility. He is still one happy, strong and courageous cowboy.  Brock is currently in school and has the best teachers, aides and therapists we could ask for.  Outside of school Brock does massage therapy twice a week, physical therapy twice a week and speech therapy once a week. He has recent started a new therapy called Pulsed Electromagnetic Field Therapy.This new therapy is re-energizing the cells in his body.Brocks quality of life is our main goal! 

© 2016 Cowboy Brock's Cause for a Cure

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Cowboy Brock's Cause for a Cure
C/O The Giving Back Fund
5757 W. Century Blvd., Ste. 410
Los Angeles, CA 90045

COWBOY BROCK'S CAUSE FOR A CURE IS A FISCALLY SPONSORED PROJECT AT THE GIVING BACK FUND INC., TAX ID 04-3367888, A NOT-FOR-PROFIT CORPORATION WITH FEDERAL TAX-EXEMPT STATUS FROM THE IRS UNDER SECTION 501(C)(3).