The Luke Billings Foundation

 
 WHO  IS LUKE BILLINGS?

You would never guess by his dimpled smile or even by his sparkling blue eyes.  You still would not guess by hearing his squeals of laughter as he plays with his sister, or his sighs of unconditional love as he hugs you….but at some point before birth, Luke suffered an injury to his brain, that challenges him daily with the motor control over his muscles and delays in his speech. It’s only when you step back to watch, that you can see… Luke does move differently.

Luke age 3 1/2

At the age of 16 months, our son, Luke, was diagnosed with cerebral palsy (CP).  CP currently affects 800,000 people in the U.S. alone, and there are 10,000 babies with CP being born each year.  CP is a non-progressive brain injury that can occur before, at or after birth, with symptoms ranging from mild to severe.  Causes of CP can be any one of numerous reasons including unknown; such as in Luke’s case, a situation for which we still have no explanation why.
As with other families we have come to know on this journey, in similar and sometimes more difficult situations, the first year after Luke’s diagnosis, left our family scrambling for answers and treatments from a myriad of sources.  His diagnosis meant hours of countless travel, doctors’ consults, appointments, therapies, procedures, Botox injections, leg braces etc., because although CP is non-progressive, as Luke’s body grows, the spasticity (severe muscle tightness) impacts his growing bones and has to be managed to prevent permanent deformity.  His therapies attempt to keep him moving and strengthen him as he continues to try to catch up with his normally developing peers.  At the age of 4, Luke underwent a selective dorsal rhizotomy to permanently reduce spasticity (see additional page to the right).

We are very blessed with those around us, giving us constant love and support.  As we look to the future, we cannot help but appreciate all of the progress Luke has made so far.  There were times we thought he would never walk or talk, both of which he now can do. Luke’s 9 year old sister, Alexandra, continues to be just that:  A BIG sister!  She has learned more than some people do in a lifetime about sharing and giving.    

In between his new role as a First Grader at Big Walnut and a Spongebob and Scooby Doo maniac, Luke attends various therapies for hours a week including speech, occupational, physical.  He is definitely a chick magnet with his smile. But that infectious personality continues to keep his therapists’ wrapped around his little finger.  He continues to refine his skills of swimming and riding his bike (with training wheels) in the summer.  He adores his family and loves to be on the go including sleepovers with his favorite aunts. His favorite food is pizza and bow-tie pasta.

Luke, known to many of us as “Lukie,” is undeniably the ONLY person in our family who does not realize he has a disability.....at least not yet.  His energy to handle all of the rigors of his complicated therapeutic world is truly amazing.  His daily schedule would humble many of us adults, and yet he continues to do it all in stride with such a care-free and happy spirit. We are honored to have been given the opportunity to be his parents, as he has already taught us so much about mind over matter and the pure guts of daily determination. His resiliency and courage will continue to move not only mountains throughout his life, but also our hearts.

It is in honor of our son that this foundation started, and it will be with the same perseverance that Luke has every day with his disability, that this foundation will grow. We hope to help many families and their children challenged with CP as they courageously battle this disease.