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Rainbow Star Books appeared in my heart and hands all because of one very special little boy and a real-life Kansas rainbow...

In 2003, I treated a toddler named Christopher Killoran.  He had speech and language delays due to a history of infantile seizures.  Christopher received other services including occupational therapy, physical therapy, and special instruction.  Christopher was this adorable, blonde, blue-eyed, beach boy who just loved to be outside!  Oh, and what a smile!  Everyone melted in his smile.  He was the hardest worker and blossomed in more than a year's time.  By late winter of 2004, our time together was coming to a close as Christopher was transitioning to school programming for the fall.  His early intervention team was thrilled with his overall developmental progress and looked forward to celebrating his great success in the EI program. 

However, as the spring rains rolled in so too did a terrible storm for Christopher.  We all started documenting reoccuring seizures.  Week after week, these episodes left him zoned-out, dazed, and lethargic.  His family and team started reporting regression in almost all skills areas.  Christopher had instantly slipped away... I was stunned and saddened to see Christopher become like a zombie.  He endured countless EEG's and consultations with neurologists.  Christopher was diagnosed with Lennox-Gastaut Syndrome (LGS).  LGS is one of the most severe forms of childhood epilepsy.  Research reports no cure for this disorder.  LGS seizures are typically treatment resistent.  They are often accompanied with mental retardation and behavior problems. 

As a therapist,  I witness many severe childhood disorders and many hurting families.  But there was something different about this case.  Maybe because I knew Christopher full of the bright blue sky and then saw the dark cloud take him away right before my eyes.  This time more than ever, I was part of the storm.  All I could do was pray.  But, I felt there was something else I was supposed to do.

In the midst of all this heaviness, I had a scheduled trip to attend my highschool reunion in Kansas.  On the last day of my stay, my parents took me to my favorite restaurant on the Plaza.  After dinner, we headed home down a street called Rainbow Boulevard.  It's just a normal busy street with fast moving traffic, lined with rows of businesses and a hospital.  My Dad zipped on down the road when suddenly I saw the most amazing rainbow appear in the sky!  I just happened to have my camera on my lap and quickly turned in my seat to snap the picture.  The symbol of a rainbow represents the Lord's love and promises.  So instinctively I thought of my own needs, dreams, and desires.  I was filled with happiness and peace.  I looked at my camera's screen and realized that I not only captured a rainbow but a rainbow next to the Rainbow Blvd. street sign!  It was a reminder that miracles can happen.  My thoughts drifted to Christopher.  The rainbow wasn't for me... it was for him.

The Kansas rainbow followed me back to New York as my attention refocused on the Killoran family.  The following week, I pulled into a nearby marina for an extended lunch break.  I watched the ferry and boats move in and out across the water.  Then my mind wandered to rainbows, miracles, and Christopher.  Several hours later, I produced a story called Rainbow Promise.  I presented my homemade book and the rainbow picture  to the Killorans at the end of our last therapy session.  We discussed that it didn't matter what the doctors might say... that anything is possible.  Darkness was not going to take away the light of their little boy!  It takes both rain and sun to make a rainbow.  The rainbow was there, but they just couldn't see it yet.  The family would keep fighting the storm until they got their sunshine back.

The last several years, I've found myself giving out pictures of the rainbow on Rainbow Boulevard to families who need an extra dose of encouragement.  So today...I present my rainbow to you!  Pull it out whenever you need a little smile, a little strength, a little comfort, or even a little hope.  Here's an excerpt from my story Rainbow Promise:  "Dreams do come true.  They can happen for you.  Hold on to it tight, with all your might.  Never let it go.  Your promise of a rainbow might be closer than you know."

Rainbow Star Wishes,

Michelle Zimmerman

PS:  Take a look again at the Rainbow Blvd. picture.  Do you see the lamppost arching in the sky next to the rainbow?  This is the inspiration behind the Rainbow Star Books logo design!

Do you have your own rainbow inspiration story?  If you do we would love to post your message of joy, peace, strength, hope or even a miracle on our website.  Your rainbow will bring a little sunshine to all who read it.  Click here to tell us your experience.

 

 UPDATE ON CHRISTOPHER KILLORAN

(Excerpts from Pam Killoran's journal)

"Christopher's Rainbow"

 

 

July, 2004- Michelle, Christopher's speech teacher, gave me a book called The Rainbow Goblins by Ul De Rico.  The book is a story of goblins who try to steal the rainbow from the forest.  The flowers end up saving the rainbow and the goblins melt in the rainbow colors.  Michelle wrote in the book cover:  "Christopher's rainbow will not be stolen". 

August 18, 2004- This is the day that the "puzzle pieces" literally came together.  Today was Michelle Zimmerman's last session with Christopher.  I was moved to hysterics when she read me her story dedicated to Christopher called Rainbow Promise.  When she left I was emotionally drained.  I couldn't even open the card that she left me.  I went up to Christopher's room and asked God, "Why can't I get my own message or sign?"  It was late and Christopher wanted his nightly bedtime video.  I looked all over the room for his favorite farm video.  I searched under the bed and in drawers.  I happened to look in his train table drawer that contains transportation items and nothing else.  There in the corner of the drawer staring up at me was a single magnetic puzzle piece... a rainbow!  I was and still am in awe.  The next morning, I opened the card from Michelle.  She gave me a scripture from Genesis in the Bible that says that the rainbow is a sign from God to Noah and His people that He will remember His promises.  It was then that it clicked for me that the puzzle piece I found was from a magnetic Noah's Ark board game.  I went up to Christopher's room to look in the drawer again and there were no other pieces from the game.  I found the Noah's Ark board way up at the top of his closet - far from the drawer.  The story does not stop there....  Christopher and I went to Montefiore Hospital in the Bronx to get another opinion about our options for Christopher.  While sitting in a very uncomfortable waiting room my friend Dawn pointed in front of me and said, "Pam, look it's Noah's Ark!"  It was a built-in wall game for children.  The caseworker walked us to a vacant room to give us an idea of the layout.  There was a beautiful rainbow painted on the windowpane.  As I'm writing this down, I received a call from Montefiore that a bed in the Epilepsy Unit may be available for Christopher tomorrow.

September 8, 2004- The first night of our stay at the hospital the EEG monitor broke and they had to move us to another room.  I couldn't believe it when the room was the one with the rainbow painted on the window next to the door!  I smiled throughout the night every time I looked at it!  I felt strongly that I was led to bring Christopher to this hospital.  However, as the days wore on I became less hopeful.  I started to question my decisions.  The test revealed a terrible EEG.  Although clinically the exception to the rule so far, they said Christopher could "crash".  His development could slowly or rapidly deteriote.  They switched his meds but in my gut I don't think we will get seizure control with any med.  I went home that night and decided to become more knowledgable about the Ketogenic Diet.  I decided I was brave enough to view the video I had taken from Dr. Shinnar's office, "The Ketogenic Diet".  On the cover of the video, behind a young boy's dear face was a rainbow!  I had asked God to guide me and here was the rainbow again.  Christopher will gain seizure control on this diet - I just know it with all my heart.

February, 2005- I called a treatment facility.  We are booked for April 2005.  Our insurance won't cover us in full because the hospital is not participating but I believe this is where we are supposed to go.  I finally brought myself to watch the movie, "First Do No Harm".  With the exception of grand mal seizures, it is our story.  I cried most of the movie.  Then I got goose bumps and hopeful because at the end when the child became seizure free on the keto diet, the song in the background was Somewhere Over the Rainbow.

June 27, 2006- In spite of the neurologists who tried to discourage me from putting Christopher on the diet; and in spite of the fact that we had never heard of the hospital we were going to.... Jim, Christopher and I kept our appointment with Dr. Zupanc at Children's Hospital of Wisconsin on April 4, 2005.  It's hard for me to write this because it takes me to that dark, frightening time that we were losing our son to seizures.  The months prior to our visit, Christopher was on several drugs.  Sometimes he was on three at one time.  Nothing was working and his behavior turned ugly.  He started the diet on April 6, 2005.  Christopher surprised us at his adaptability to this new eating regimen.  We fed him measured amounts.  We carried around vials and containers like mad scientists.  He never complained or fought us.  This burden made me question if I was following the rainbow out of my own need for an answer or if it was truly God's path for us.  Christopher never went a day seizure free on the diet during the three and a half months that he was on it.  His seizures drained him of energy and life.  It stole all of our spirit.  What had I done dragging my family across the country and subjecting my child to a difficult and repulsive meal plan?  The promise of the rainbow had faded for me.  I called Dr. Zupanc on June 20, 2005.  They scheduled us for another long term monitoring for July 13, 2005.  The doctor said that there was one other drug that we could try.  She told us that the drug had the potential to kill Christopher and that we would have to sign a waiver acknowledging the life threatening side effect of the drug.  There was no question that we would try this.  Within 3 days Christopher became seizure free from the myoclonic seizures!

 

March 18, 2009:
I just read back over my "rainbow journal" entries and I am tearful.  I am overwhelming thankful to Michelle for sharing God's message of hope through His rainbow.  Our life has changed in an amazing and beautiful way.

God guided us to the miracle we had prayed for!  Christopher continues to be seizure free on the same dose of felbamate that he took when he first started.  I feel totally unworthy of the gift that God has given us.  I'm humbled and grateful for His grace and mercy.  -The keto diet didn't appear to work for Christopher.   But I believe it helped cleanse his body of drugs and may have altered his metabolism so he could respond to the felbamate.   Christopher's April 2008 overnight EEG indicated that he still has a propensity for seizures.  But we don't focus on this negative report.

I'm ecstatic to tell you that as I write this, my 7 year old son just dressed himself for school (I set his clothes out for him).  He goes to a "typical" 2nd grade class with an aide. He receives speech and occupational therapy twice a week.  He takes swimming lessons and is in karate.  Christopher loves play dates with children from his class.  He loves learning new things and is very proud when he accomplishes a task.  We discovered that Christopher has quite a sense of humor and likes to make us and himself laugh.  His beautiful smile is back and he brings a smile to everyone he meets.  His progress is a miracle and we are very grateful.  The dark period has taught us to be appreciative on a daily basis for the joy and blessings that we have in our life... 

The crystal in my car hanging from the rearview mirror reflects rainbows  and the rainbowmaker in my kitchen window makes rainbows dance across my home.  I feel strongly that we were meant to be on this journey and that our real pot of gold isn't the miracle itself but the lessons of faith that we learned along the way.  Whatever the future may hold, I'm joyful in the hope of what the beautiful colors bring to me.

 

 

 

 Christopher and Pam Killoran

 

November 2011-
Christopher is ten years old and in the fifth grade. He is in the highest grade of his elementary school and he has the saunter that boys acquire when they have become "man on campus" (Remember how shy he was?).  Due to his medical diagnosis, he shares a teacher's assistant with another boy in his class.  Technically, it is to protect him in the event he has a seizure, but in reality, she helps him stay on task and keep focused.  Although it's early in the school year, his teacher tells us he is doing great and is a joy to have in the class.  He does receive extra help with reading and speech as well as occupational therapy once a week.  He has all A's and B's so far, but he does have to work hard academically.

He has, by the grace of God and all who have prayed for him, been seizure free for over five years.  As a matter of fact, we just got home from a three day stay in a NYC hospital for his annual neurological checkup, which included an MRI and being hooked up to an EEG for three days.  Muscle memory kicks in for us when we walk into the pediatric epilepsy unit - the fear and dread was overwhelming.  It is as if we were back in that horrific period of active seizures.  Gratefully for us, his MRI was normal and his EEG showed "no electrical seizures".  His night EEG, however, does still show rare atypical spikes/blips which indicate a propensity to seize.  The doctors recommend that we continue him on the felbamate three times a day.  They did say that weaning from the meds is a possibility as the atypical activity may or may not lead to a seizure if the medicine is removed.  We aren't ready to take that chance yet.  The neurologist also said that it is amazing that Christopher has been diagnosed with the two worst forms of epilepsy - the dreaded Infantile Spasms and Lennox Gastaut, as most all children with those dx are unable to walk, talk or function.  He said that his recovery is "remarkable and uncommon".  We told him that we know it is the result of a miracle.

When we got home from the hospital, Christopher immediately went outside to play catch with his dad.  Being confined to a bed for three days puts you in "patient mode" so he was eager to get back to typical ten year old activities.  He loves being active and absolutely loves electronic games like DS, Wii, and Ipad.  He has a green belt in karate and even trophied several times in tournaments.  He only recently became interested in baseball and has been taking lessons so that he can play on a Little League Team in the spring.  The epilepsy kept him from sports when he was younger but now that his seizures are controlled, he is ready to catch up.  He told us he wants to play rightfield for the Yankees...

...Who knows, right Michelle? ....With God, all things are possible.

                          

To learn more about the Killoran Family visit, www.christophersrainbow.com.

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