Thank you for visiting our website. ourboysjourney.com is a way for the Hawkins family to keep friends and family informed about our life with Batten Disease.
Brandon and Jeremy were diagnosed with Juvenile Batten Disease in 2006. For those who are not familiar with the disease Juvenile Neuronal Ceroid Lipofuscinosis(JNCL) is a terminal illness that begins to manifest between the ages of 5-8 years old. Usually the first signs are vision problems, and in Brandon’s case learning difficulties. Seizures and short term memory loss are also a big part of this disorder. Although the how and why this happens still hasn’t been discovered we do know that it is a devastating neuro-degenerative disorder. A once healthy and thriving child, over time, loses the ability to see, walk, talk and even to swallow. Behavioral issues are frequently observed and at times are attributed to frustration levels. A parent once described it like being blind, epileptic, and autistic as well as having ALS(Lou Gehrig’s disease) Alzheimer’s disease and Parkinson’s disease all rolled into a child who was once running, jumping, laughing and playing. Most JNCL children pass away in their late teens or early twenties.
At this point, at the age of 16 and 12, Brandon and Jeremy are happy children who love to play, especially with their dogs Cubby and Commanche! Also, Beyblades, Pokemon and Yu Gi Oh seem to be playing a big part around our house lately. Both boys use canes for navigation and are on medication to control seizures. Brandon’s short term memory is very spotty and Jeremy has issues with behavior and frustration levels. Brandon has been slowing down a bit, taking naps at school even though he has a shortened day and we have had behavioral issues at school and home. Brandon has had several seizures recently despite the medications, he also has begun to ask questions about when the doctors are going to find a cure and it breaks my heart to not have an answer. Jeremy’s vision is pretty much gone as well, but we are blessed to be in a school system and a community that truly has the boy’s best interests at heart. Jeremy is having difficulty with the transitions in middle school but overall they both enjoy school, their teachers and their classmates!!
We continue to raise awareness and funds for the Batten Disease Support and Research Association in hopes of finding a cure for all forms of Batten Disease, Please check this site for events in the Charlotte/Concord area and the national website for events near you. Thank you to so many of you for the things you have done to support us along this journey. They are greatly appreciated!