About

Updated August 24, 2013389675_3422039103258_1029346273_n

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!

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12 comments on “About
  1. Renee Shelton says:

    Hi Chris,
    I just wanted to tell you all hello and miss you all.I have moved to Mount pleasant Kids Plus to be closer to home and to my kids.Keep me informed of any events and I will get them out there in this part of town.You know out in the country.Hope you all have a blessed day!

  2. Rob Geer says:

    I like the new website! I can’t let me kids (or wife) see pictures of the new dog. They’ve been begging for one. Merry Christams to the Hawkins from the Geer family!

  3. Beth Hultquist says:

    Hello Hawkins family!

    We are new to the area and our daughter Emma is in class with Jeremy. She just thinks the world of him and always has a fun story or some great thing he did in school today!

    I’m glad I found your story!

    Please tell Jeremy thank you for being such a good new friend to Emma!

    Beth

  4. Shelly Griffin says:

    Hi there, I just read you story on the charlotte observer and it really touched me.. I am the proud mother of 6 year old and 6 month old sons. Your story really struck a cord with me. When I think about the future for my sons, I hope they have a bond as close as the ones that your sons share. I will post you story on my facebook page this weekend in honor of Batten Disease awareness week. Thanks for sharing it!

  5. Hi there, I just read you story on the charlotte observer and it really touched me.. I am the proud mother of 6 year old and 6 month old sons. Your story really struck a cord with me. When I think about the future for my sons, I hope they have a bond as close as the ones that your sons share. I will post you story on my facebook page this weekend in honor of Batten Disease awareness week. Thanks for sharing it!
    +1

  6. Alicia Kayser says:

    Hi Chris & Wendy,

    I just wanted to let you guys know that I think about your family often. I hope the new discovery is successful. I will have you all in my prayers.

    Lots and Lots of Love,
    Alicia Kayser

  7. Courtney Frye says:

    I am a student teacher at HRMS and I teach 8th grade math and science. One of my assignments is to observe four different teachers, and one that I really wanted to osberve is special education. I met Brandon today, and I found out about the disease he has. I have seen him everyday this school year in the cafeteria, but I never knew his story. I am so touched by your family and the efforts made to not give up. I’ll be praying for strength and grace for you and definitely for your boys too. Brandon was definitely a precious person to meet.

  8. Emma Biggs says:

    Hello Chris and Wendy! I just want you to know that you are continuously in my prayers. You two are such an inspiration to me and to many others. Like I have told you before, you have truly learned the meaning to never take one moment for granted. You will never know the impact that you leave in this community. I will never forget the 1st time I met Brandon or Jeremy. We were at Odell and Brandon was quick to let me know that I needed not to move anything! LOL! I pray that there will be a cure found and I know God is in control of it all! Love you and miss you guys! Ms. Emma

  9. Tom Sullivan says:

    Hello Hawkins. This is Tom Sullivan from Scouts and Moss Creek. Sorry i didn’t find your email in my address book so figured i would hit you up here. Hope your summer is treating you well. I wanted to let you know about an opportunity that you all might want to look into. As you know i work for NASCAR and our NASCAR Foundation is holding its first BEtty Jane France Humanitarian Award program. This program is intended to honor the volunteer spirit of NASCAR fans and the winner will receive $100,000 for their favorite charity. With all the work you do for the Batten Disease group i’d suggest you all nominate yourselves! or perhaps others you know. The link for the nomination form is here at http://foundation.nascar.com/NetCommunity/Page.aspx?pid=1414
    I hope you all consider it. Take care!

  10. Laura says:

    I was so blessed to meet the boys during their visits at Sweet Frog. I’m so glad to know that you all have Jesus as the source of your peace through all of this. The love you have for these boys is so apparent and it touches me everytime you walk in the shop. I will be continuing to pray for your precious boys and I believe that God wants to fully restore your them, it’s His joy to do so! Believe it! God will be glorified in and through their lives! Blessings!
    -Laura

  11. JIm Nielsen says:

    Chris and Wendy,
    Hardly a day goes by that I don’t think and pray for your boys so I finally had to see what is happening with them. I am so happy to hear that the disease hasn’t worsened as I had imagined and yet with a daughter who may have a terminal illness it really hits home to me. I’m hoping I can come up to the race Saturday and see you even though I don’t run anymore.

    Jim Nielsen

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