Links to Family Websites
A Cure for Nick
On February 11, 2008, at the age of six, Nicholas Wellner was diagnosed with Infantile Neuronal Ceroid Lipofuscinosis or easier said, Batten Disease. Batten Disease is an inherited, degenerative neurological disease that mostly affects young children. At thisÂ time there is no cure or treatment and the disease is always fatal.
Nicholas has always been our most energetic child! We always loved to watch him play football with his brother in our back yard. With his energy and strength we thought we had the next NFL star. Unfortunately, that has all changed.
Averee’s Purpose is an organization developed to inform and bring awarness to Battens Disease. Though there is presently no cure for this disease, with your donations, you are helping to fund for research. We hope that through this funding, one day a treament or cure will be found and a child that is affected by this horrible disease will have a chance to be cured. This is Averee’s Purpose.
Catherine’s Hope for a Cure
My name is Catherine Horowitz and I live in South Florida with my loving husband and our two beautiful boys, Nicholas and Alex. I have Batten disease, a Neuronal Ceroid Lipofucsinosis (NCL) disorder. I, like my father, have the late-onset form of this illness; Kufs disease.
Batten disease is a progressive, always fatal, neurodegenerative disease in which there is no cure. There is dire need for funding to help find a cure and raise awareness to this devastating illness.
Davidâ€™s Refuge is a non-profit bed and breakfast retreat for parents and guardiansÂ who care for children with special needs or life threatening medical conditions.
Fight for Nicholas
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.
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.
Holding Onto Kate
Join us in the fight against Late Infantile Batten Disease. We will always have hope for a cure and always have hope for Bridget.
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 â€œgoing out to eatâ€ (even though he doesnâ€™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.
Jasper Against Batten
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.