Broxton’s entire journey has been thoroughly and beautifully documented HERE.

Born in December 2009, Broxton was the perfect Christmas present for the Taylor family.  He was instantly loved and adored by his parents and big brother, Brody!  He excited them all as he hit those first year milestones of learning to crawl, walk and say those first words of da-da and ma-ma.  At around 15 months old, Broxton was evaluated by  his pediatrician for some abnormal walking.  This began a roller coaster of several months of visits to specialists, blood tests, MRIs, hospitalizations, all while Broxton regressed to no longer saying da-da and ma-ma, eating less, having more difficulty with walking and crawling, frequently crying as though he is in pain, and worsening difficulty with  sleep.

Finally, after several months, in June 2011, some genetic tests came back diagnosing Broxton with Infantile Neuronal Ceroid Lipofuscinosis (NCL), also known as Batten Disease.

 

Batten Disease is a rare genetic disorder in which affected chilren suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills.  Eventually, chilren with Batten Disease become blind, bedridden, and unable to communicate, and it is presently always fatal.  The Infantile form of Batten Disease begins between the ages of 6 months and 2 years and progresses rapidly.  Affected children fail to thrive, have abnormally small heads, and typically have short, sharp muscle contractions.  Initial signs of this disorder include delayed psychomotor development with progressive deterioration, other motor disorders, or seizures,  The infantile form has the most rapid progression and children live into their mid-childhood years.  (**this paragraph taken from the Batten Disease Support and Research Foundation web site, http://www.bdsra.org/)

 

 

The 1st annual Run for Broxton was organized in February 2012 as a fundraiser to assist the Taylor family with Broxton’s medical expenses. The event was extremely successful with over 500 participants running and/or walking to honor Broxton.  Even more importantly, the event helped raise awareness about Batten Disease.  Unfortunately, on April 20, 2012, Broxton’s battle with Batten disease ended and he became a shining angel in heaven. However, our fight to find a cure is ongoing. Therefore, the Run for Broxton will be an annual event with all proceeds going directly to the Batten Disease Support and Research Association in memory of Broxton. The Taylor family is excited to see even more participants running and walking this year in Broxton’s name to help raise awareness and funds for Batten disease.

 

 

 

 

 

 

 

 

    

 

Learn more about Batten Disease here.