She does not talk or walk. She does not play for fun. But she smiles, while out for a run.

Ainsley's Story Part 1 

I do not know who first said, “Life is not measured by the number of breaths you take, but by the moments that take your breath away”, but my family refers to it often.  For you see, it is when a slight wind takes Ainsley Rossiter’s breath away, that she smiles the brightest.  As she approaches her ninth birthday, Ainsley’s heart-capturing smiles are now few and far between, but represent those moments that take our breath away. Voluntary or involuntary, today’s occasional smiles are the only way we feel she may be communicating with us, and many of these smiles have come while she is out for a run.   

AN ANGEL IS BORN

Born aboard Camp LeJeune, North Carolina on December 10, 2003, Ainsley proceeded to meet all of her first year milestones.  From pointing toward the garage door and saying, “DaDa” as my car pulled into the driveway to smiling while swiftly crawling toward my arms as I came through the door, Ainsley embarked on her second year just as most children do.  I recall my excitement while writing the note left for her on the eve before deploying to Iraq in February 2005, “Ainsley- Daddy looks forward to seeing you run around the backyard with your sister when I get home!” A few months into this deployment; however, ‘mother’s intuition’ led my wife to voice concern to Ainsley’s doctor about her inability to walk at 15 months. These concerns yielded a twenty-four month emotional roller coaster ride that included two MRIs, multiple blood tests, countless doctor visits, many emotional conversations, and a nerve biopsy.  During a subsequent deployment in 2007, I received a message to phone home.  As I dialed the long series of required numbers to reach my wife, who was halfway around the world raising our three children under the age of six, my mind raced.  Soon she answered and proceeded to explain the Oregon Health and Science University completed its study and clinically diagnosed our sweet Ainsley with an extremely rare progressive genetic nerve disorder called Infantile Neuroaxonal Dystrophy (INAD).  Silence.  Confusion.  Anger.  Uncertainty.  Denial.  Sadness.  Life as we knew it changed forever, as there is no cure for INAD and it affects the nervous system, globally.  Because the dystrophy is progressive, it becomes worse over time and Ainsley will begin to lose skills that she previously had..  At the end stages of the disease, generally between the ages of 6 to 10, children are usually blind, no longer have voluntary movements, and have lost all awareness.  If you are looking for an example of the word, DEVASTATED, look no further.  Details of the following few months are blurry, but living up to the idea of always taking care of its own, Marine Corps leadership prevailed and I was eventually reunited stateside with my family, we received orders, and relocated to Virginia Beach during January 2008. 

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WHO IS AINSLEY?

Ainsley does not talk or walk; she does not play for fun; but she smiles, while out for a run. An inspiration to thousands, she is an amazing little girl with a smile that will light up any room. Shortly after being diagnosed with an extremely rare progressive genetic nerve disorder called Infantile Neuroaxonal Dystrophy (INAD), Ainsley completed the Surfer's Healing Virginia Beach 5K road race. Her first of many running-aided, wind-induced smiles took our family's collective breath away as she received her finisher's medal and became an official Team Hoyt Virginia Beach (THVB) ATHLETE! Inspired by Dick and Rick Hoyt, and the only running team authorized by the Hoyt's to use their name, THVB provided Ainsley's family with a therapeutic means to fight the devastation associated with learning and trying to live with the fact that your child has a terminal illness. The positive energy surrounding the start line, the children smiling from ear to ear, the togetherness of every member preparing to "roll with the wind", the fearlessness of the athletes, the normalcy of the family, and the love we all have for each other is a therapy like no other. In an effort to spread this amazing experience to as many people as possible, Ainsley's Angels aims to see other families experience what the Hoyt's have experienced over 1000 times and what we have experienced over 25 times (so far). As such, we created this chapter of myTEAM Triumph to ensure others can "roll with the wind" and live up to the philosophy of, "Yes You Can."

Ainsley's Story Part 2

Comments

jessicatcoates's picture

Dear Rossiter Family, I have laughed and cried as I read Ainsley's story bit by bit here in my office today! It's like I'm reading pages and chapters of my personal journal. I too have a special Angel, Zion Alexander Coates (6yrs old), with INAD's!! We are in Birmingham, Alabama. Zion was finally diagnosed in Sept.2008 (@2years old). To keep a long beautiful and scary story short, like your beautiful Ainsley, Zion has changed our lives!!! The way I experience God and his greatness each day through Zion's life and testament can never be described in words. I look forward to getting to know your family and please check out Zion's blog and events page when you can: www.caringbridge.org/visit/zioncoates Jessica Coates (205) 401-6664 [email protected]