Connor's Wish to Walk

Connor was born on November 15, 2012.  After a perfectly healthy pregnancy, things took a turn for the worse during delivery.  Connor went into distress during the last few minutes of the delivery and was deprived of oxygen.  He was having seizures immediately after birth and was rushed by ambulance downtown to the Cleveland Clinic NICU.

He was immediately placed on a cooling blanket for 72 hours which lowered his body temperature in hopes of lessening further brain damage.  His condition was very grave and it was unclear whether or not he would survive. 

Connor did survive, and was discharged from the NICU 4 weeks later.  Unfortunately, he suffered severe brain damage from the lack of oxygen during delivery.  He was diagnosed with spastic diplegic cerebral palsy (CP) at one year of age.  As a result, he is severely delayed in speech and motor function. 

But Connor is a fighter.  Through intensive physical, occupational, speech, and aquatic therapy, he has reached milestones that doctors told his parents, Katie and Mike, that he would never achieve.  They were told he would never sit up, he would never crawl, he would never be able to eat normally (without a feeding tube), and that he would never walk. 

Through therapy, Connor did learn to sit up, to crawl, and to feed himself solids.  The walking has proved to be an immense challenge though, due to the spasticity (muscle tightness) in his hips and legs.  He wears braces on his legs, receives botox injections in his hips and legs as well as taking oral medications to loosen his muscles, and has learned to walk with a walker.  However, it is extremely difficult and in patients with CP, the muscles become tighter and stiffer over time.  It is a struggle for him to walk and he is smart enough to understand that his body is failing him.  That brings us to where we are today.

Katie learned of a medical procedure called Selective Dorsal Rhizotomy (SDR).  This is a spinal surgery that has proven to have very positive outcomes for patients with CP.  SDR is a delicate surgery, where the lower portion of Connor's spine will be exposed.  The nerve fibers in his spine will be tested and the "bad" nerves that are causing the spasticity in Connor's legs will be cut.  After the procedure, Connor will receive many months of intense therapy to retrain his body to learn to walk.  But with the spasticity gone, independent walking will hopefully be possible. 

Connor is scheduled to have surgery on December 11 at St. Louis Children's Hospital by the world-renowned Dr. Park.  While their medical insurance will cover a portion of this procedure, there are many other costs that Katie and Mike will have as a result of this surgery.  The drive to and from St. Louis, a week-long hotel stay, the many therapies and equipment Connor will need over the coming months, etc. 

Katie and Mike are such hard-working parents.  They have handled all these obstacles and Connor's special needs with such strength and grace.  Their deep faith in God has carried them through some very tough times.  They will do whatever they can to help Connor achieve the most and to have the highest quality of life possible. 

Please consider donating to Connor's Wish to Walk.  Any amount would be appreciated, but even if you can't donate, please keep Connor and his family in your thoughts and prayers as these coming months will be very tough.  Connor has defied the odds again and again in his short life, and we fully expect him to continue to amaze us. He is our miracle! 

Thank you so much for taking the time to read this.

Love,
Candace Lewis
(Katie's sister/Connor's aunt)

"We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope." -Romans 5:3-4

Connor at one week old in the NICU at Cleveland Clinic main campus. Photo taken on Thanksgiving Day 2012.

Connor and his brother, Andrew. They are best buddies!

Connor showing off his new walker for Aunt Sara and Santa. Christmas 2014.