My Reason to Run

I'm not sure how Sally West has this kind of power over me, but she's the person responsible for the journey upon which I am embarking.  I am thankful for her today, as I step one foot closer to my vision.  This journey excites me beyond belief.  Putting the physical challenge aside, I am excited HIGH over the thought of making our community aware of the challenges faced by the children in the Joubert network, while actively doing something to help.  Your enthusiasm and passion to join us in this race warms me, and I thank each of you from the bottom of my heart.

Grab some coffee while I tell you about my journey thus far:

My little Kayden is eight years old.  She smiles quickly, loves whole-heartedly, and when she laughs (which is often), she laughs all over.  She is quick-witted, short-tempered (comes with that red hair), and lots of fun.  She loves life. 

When she was 9 months old, she was diagnosed with oculomotor apraxia: a rare eye condition that prevents saccades, or quick horizontal eye movements.  Basically, she has no peripheral vision.  At 9 months she wasn't yet pulling up, trying to crawl, or even sitting up on her own; she could barely roll over unaided.  We visited several local (Houston) pediatricians but no one had answers.  By 12 months she was able to sit for short periods of time but had not progressed beyond that.  Finally, around 20 months she began to crawl, and with the aid of therapy, learned to walk at 26 months old.  No one could give me a reason for her delays. 

Shortly before her 7th birthday, in December 2008, a family member recommended that we see a pediatric neurologist.  Because of her physical impairments, coupled with unstable moods and unpredictable behavior, we were willing to do anything!  Soon after, in January 2009, Kayden was diagnosed with Joubert Syndrome via MRI, and thus our journey began. 

Joubert Syndrome is a malformation - either an underdevelopment or complete lack of development - of the cerebellar vermis, a piece of the brain that controls smooth speech, fine and gross motor skills, balance, coordination, and a plethora of other things.  God did make our brains a rather complicated organ!  Our medical world is widely ignorant of this condition.  There are 350 known cases in the US and only 650 worldwide.  Five causing genes have been identified since its discovery

Although, at age 8 1/2, Kayden is far more fortunate than many other JS patients, she is still faced with many challenges that only God knows if she'll overcome.  Among other things, her lack of coordination and poor balance disable her from riding a bicycle; due to oculomotor apraxia, it is unknown whether or not she will ever drive a car; her inability to focus on a set task challenges her in school, just as it could in the workforce later in life.  We do what parents do and work around these things, of course.  She doesn't need to ride a bike in order to live a full life; public transportation is available in many places, should her adult life require that; and we homeschool, allowing more opportunity for review and sufficient time for work completion.  But many children with JS are not as fortunate.  Some never walk, some never talk, they suffer breathing problems and kidney failure when many times they are too weak for transplants, they are confined to wheelchairs, have extra fingers and toes, and the list goes on.  These children need our help! 

I am so excited to be where I am tonight - worrying over details and pouring my heart out, mentally exhausted from the effort that's going into this benefit.  It's going to be worth it!  We can make a difference for the 650 children who have been diagnosed with JS and all the others who have it but don't yet know it!  For all the mothers who lie awake at night and wonder why their toddler hasn't said her first word or doesn't walk, for the doctors who want to help yet have no answers - WE CAN HELP! 

So...while I thank Sally West for sparking my commitment to run, Kayden is my reason.