Our Boys Journey
Last Updated 2009-12-02 at 07:27:03
Quick Links
Links to Families Affected By Batten Disease
Please click on each Question Title to read more information
Website Translation
Recent Bulletins
Help Raise Funds
Donate to Batten Disease and help fund the necessary research developments to find solutions to Batten Disease.Fight for Nicolas
Last Updated 2010-04-08 at 07:02:08
Nicolas is a 4 year old boy. He loves to play with his toys especially cars, trucks and trains. His huge smiles and contagious laughter can melt your heart. He has eyes that can make your heart stop and the longest lashes you've ever seen although there is so much more to him than meets the eye. He's always looking to hug and kiss everyone and loves to be the center of attention and make everyone laugh. He is the sweetest little boy we know although he has already gone through so much in his life. He is the one that keeps us going strong every day.Sadly, Nicolas has been diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL) or more commonly known as Batten's Disease. We need your help to fund research to find a cure for this horrible disease. Donations will be used for research as well as Nicolas' medical needs. Please click on the donate button if you wish to make a donation.
Read more online (off-site link) Jasper Against Batten
Last Updated 2010-02-17 at 10:17:46
The mission of Jasper Against Batten is to approach the challenges of Jasper's disease with the same spirit that our young son approaches his world with enthusiasm and commitment. Though there is currently no cure, with your donations, we are funding the most promising research and working to quickly develop new treatments to stabilize and eventually reverse this deadly disease. The gene connected to Batten/LINCL as well as the specific enzyme that is missing for these children have already been identified. We will cure this disease. We need to do it now.
Noah's Hope
Last Updated 2010-02-17 at 10:07:21
We created the Noah's Hope Fund to support research, raise funds, and inform the community before we knew that Laine would also fight this terrible disease. Now we pour ourselves into Noah's Hope for the benefit of both Noah and Laine, and for Emily who will watch as her siblings travel on this difficult journey.
This website will show you how to support Noah's Hope through fundraising, events, and donations. Explore the site to learn more about Noah and Laine's stories, and about Batten Disease. Please become part of Noah's Hope, and encourage others to get involved. We believe that a cure will soon be available, and we will absolutely fight until it is. Together we can make a difference.
Hope4Bridget
Last Updated 2010-02-17 at 10:06:59
Join us in the fight against Late Infantile Batten Disease. We will always have hope for a cure and always have hope for Bridget.Our Promise to Nicholas
Last Updated 2010-02-17 at 10:05:53
Batten disease is a potentially very curable disease if given enough support for research. Please view our web site, learn more about this disease and help us find a cure. Our promise to Nicholas is to find a cure!
FightBatten.com -- Heightened Awareness
Last Updated 2010-01-22 at 12:15:03
Take a look at the Products page for T-Shirts, Bracelets and other items that show your support for Batten Disease Awareness and the BDSRA.
Not only will your purchase be helping to tell the world about Batten Disease, but you will additionally be aiding in the cure because the money from your purchase is donated to the BDSRA.
Nick's Battle Foundation
Last Updated 2009-12-02 at 07:35:19
Nick's Battle Foundation is named for Nicholas Heuchan. A Dundalk,Maryland boy that was discovered to have the disease at the age of six in June 2003. He is not letting Juvenile Batten Disease slow him down. Nick is your typical boy that wants to let nothing slow him down. He just wants to be like his friends. More information on Nick can be found at www.nicksbattle.com.1. This organization was formed to help raise the awareness and to help educate the public about Batten Disease throught various means.
2. We will also be doing fund raising to help find a cure and treatments for Juvenile Batten Disease. Presently, none exist!!!!
3. We will try to assist other families with all types of Batten Disease. This help may come in different ways such as, to help with the purchase of equipment, travel, medicine and other expenses that may not be covered by insurance or medical programs.
The IRS Charity status is 501 (c) 3.
Our Boys Journey
Last Updated 2009-12-02 at 07:27:03
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. JNCL children pass away in their late teens or early twenties.
At this point, at the age of 11 and almost 8, Brandon and Jeremy are happy children who love to play, especially with their dog Cubby! Also, SpongeBob, Pokemon and Star Wars seem to be playing a big part around our house lately! You can see pictures of our whole family on our photo page. 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. We are blessed to now be in a school system and a community that truly has the boy's best interests at heart. They 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!
Taylor's Tale
Last Updated 2009-12-02 at 07:23:18
Taylor's Tale - Every Child Deserves a Happy Ending
Taylor's Tale was inspired by Taylor King, our much-loved daughter, sister and friend who was diagnosed with Batten disease in 2006.Today, there is no known cure for Batten disease, a devastating, inherited neurodegenerative disorder that robs affected children of their hopes and dreams. Current research is promising, but we must continue to support it in order to save the lives of children like Taylor.
With your help, we can write the happy ending to Taylor's Tale.
Hayden's Hope
Last Updated 2009-12-02 at 07:17:18
Hayden's Batten Disease Foundation, Inc was formed in 2008 shortly after the Thelen's daughter, Hayden, was diagnosed with Infantile Batten Diseae. The foundation has been raising money and funding promising research into a cure for Infantile Batten Disease. Mary Payton's Miracle Foundation
Last Updated 2009-12-02 at 07:14:40
Mary Payton's Miracle Foundation was formed in March of 2008 in honor of Mary Payton Vigil, a resident of Mandeville, Louisiana. Mary Payton is a beautiful five year old girl who was diagnosed at the end of January 2008 with Late Infantile Neuronal Ceroid Lipofuscinosis (LINCL), also referred to as Batten Disease (www.bdsra.org).
Mary Payton's Miracle Foundation was formed by a group of people local to the Mandeville-Covington area. Some of our children have been in class with Mary Payton, some have known Joe and/or Nikki since childhood, and some of us had never met them until the foundation was formed. All of us are working together for one common cause: A cure for LINCL.
We have filed our Articles of Incorporation with the Sate of Louisiana and Mary Payton's Miracle Foundation is compliant with the IRS rules and regulations of a 501c3 non-profit corporation. Federal Tax ID # 51-0672577. We have a mission statement, a vital mission, and the determination to accomplish our goals. We will help all children affected by LINCL.
Jacob's Prayer
Last Updated 2009-11-30 at 08:49:55
Jacob is a fun, loving 7 year old boy who can melt your heart with his smile. He loves playing with his cars, playing sports, being outside, going anywhere as long as it means we are “going out to eat” (even though he doesn’t really eat) and playing with his big brother Nick and little sister Sophia, as well as making his little brother Joshua laugh.
In April of 2008, our lives turned upside down. Jacob was diagnosed with Neuronal Ceroid-Lipofuscinoses (NCL), also referred to as Batten Disease. Over time, children suffer mental impairment, worsening seizures and progressive loss of sight and motor skills. Eventually they become blind, bedridden and unable to communicate. There is NO CURE and the disease is always fatal.
This site is a work in progress for my little girl who was recently diagnosed with Late Infantile Neuronal Ceroid Lipofuscinosis, or more commonly known as Batten Disease.