Will Herndon, 14 – Big Brother, Son, 7th Grader, Baseball player, Animal Lover, Future Zookeeper

Will Herndon is an amazing, energetic 14 year old boy who has a genuine love for  his friends, family and all animals.  Will dreams of being a Zookeeper, calls his Goldendoodle Buster his best friend and loves playing with his little brothers, Steele (12) and Magnus (9) and his cousins most of all. Will has never met a stranger, he is very friendly and VERY funny, usually quoting movie lines from one of his favorite movies, Shrek, Madagascar, CARS or Open Season.  He loves Hummers and Monster Jam and is collector of Build A Bears.  Will has a gentle heart and kind soul. At first glance you may not recognize that this child with bright green eyes and a contagious smile is fighting a rare battle with a little known disease, juvenile Batten.  The condition affects only 1 in 100,000 births and is passed genetically.  This disease, in every cell of his body, will progressively and  relentlessly take everything away from Will.  At the age 5, Will was a healthy, typical boy who loved to run (nicknamed fastest legs in Texas by his t-ball coach!), play baseball, and drive his 4-wheeler).  At 5 ½ years old, Will suffered quick and progressive vision and memory loss.  In June of 2009, at the age of 6, Will’s family received a devastating diagnosis:  XXXXXXXXXXX aka juvenile Batten disease.

Juvenile Batten NIH INFO

As Wayne, Will’s Dad researched potential treatment options (and realizing the landscape of research was dim), Missy, Will’s mom, sent out a prayer request by email the week of his diagnosis, and her email went viral.

Armed with nothing but passion and a no-fail attitude, Missy and Wayne Herndon with the help of their friends and family started the Will Herndon Research Fund aka  HOPE in The Woodlands in August of 2009, just 2 months after Will’s devastating diagnosis.  The Fund was created through Beyond Batten Disease Foundation, started by Craig and Charlotte Benson inspired by their daughter, Christiane.  The Herndons joined the Benson’s effort and together, they work towards their shared mission:   to eradicate juvenile Batten and find a treatment or cure within their childrens lifetimes.

The Herndons are blessed to have a community of love and support in The Woodlands, Texas.  Friends from all walks of the Herndons lives came together to make an impact and save Will.  A group of friends who volunteer, affectionately called the HOPE Ladies, are year-round volunteers who support events and share Will’s story.  A committed group of these ladies, our volunteer lead team lead by Nicole Murphy, works weekly to help promote HOPE and Batten disease awareness all with a mission of SAVING WILL through two major events a year: HOPE Under the Stars Gala (September) and HOPE on The Green Golf Tournament and many special, third party events from lemonade stands to birthday parties and everything in between.

Since his diagnosis at the age of 6, Will has gone blind, has seizures, has suffered tremendous cognitive losses, has developed severe scoliosis, slurred speech, and slowed mobility.  Batten Disease currently has no treatment and no cure, but there is HOPE.  Will wakes up every morning with a smile, he is positive and delightful.  He loves baseball, like his cousin Bryson, and you can find him every Fall and Spring playing in the ORWALL Little League Challenger league.  He loves attending art and is excited to do Theater this year at his Junior High.  Will dreams of being a Zookeeper and has spent hundreds of hours building “enclosures” for his animal figures which he models after zoos we visit across the United States. Will is animal and hummer obsessed, and looks forward to the day when he can drive his Dad’s off-road Hummer in MOAB.  Will sees no disability and loves all with the purest of heart. He fights a war everyday that is being waged against every cell of his body. He fights like a brave warrior, never complaining, fighting with positivity, faith and a tremendous amount of HOPE.