Monday, January 11, 2016


In 2015, there were 10 children with CDKL5 who passed away.  Eight days into 2016, the beautiful Harper Howard joined her other CDKL5 brothers and sisters before her in heaven.  All of these beautiful children fought daily seizures, infections, developmental delays, etc., and all of their little bodies were unable to endure any more that CDKL5 had to offer.  While there were a "lucky" handful of  you who checked in with me since the loss of Harper who got more than you bargained for when you asked how I was doing, odds are if you asked me how I have been doing since Friday, I lied.  

There are so many thoughts running wildly through my brain.  I have started two different blog posts already, and have been unable to finish either one.  I cannot seem to find the words.  I cannot seem to gather my thoughts.  I will say, I have gathered wells and wells of tears.  I have taken Sonya's latest CDKL5 sister's loss extremely hard, and rightly so.  The loss of any child is unbearable and a concept I will forever fail to truly understand. 

The day of Sonya's diagnosis will forever remain vivid in my mind.  It will always be as clear to me as if it happened yesterday.  I remember the drive to the office.  I remember the waiting room.  I remember bouncing Sonzee in my arms as we were given a piece of paper that would forever change our lives.  I remember asking our neurologist if the right column that stated "Early Infantile Epileptic Encephalopy-2" and "Atypical Rett Syndrome" meant that Sonzee would definitely follow that path.  I remember her reply "I would like to think not".  How naive we all were that minute.  How little we knew.

As we got into the car still in shock, I decided to google "C-D-K-L-5".  Besides the organizations website, two other blogs popped up onto my screen.  One of them was Hope4Harper.  To be honest, Sam and I were pretty devastated when we saw Harper in a wheelchair.  Again, how naive we were at that minute.  We googled "C-D-K-L-5" countless times, as if that would change the limited depressing information we found.  We watched YouTube videos, one after the other of every child I now know more about than I do any child in any of my typical children's classes at school.  I have holiday cards from them in my home, their numbers in my phone, and bonds with these children's parents that will never be broken, regardless of which of us loses our child first.

During a phone call with my mother a couple of months back, we were talking about Sonzee and we verged onto the topic of death.  My mother rightly proclaimed that she hoped Sonzee's death would not happen during her time, she said she hoped G-d knew she would not be able to handle that.  I remember through the tears I matter of factly stated, "Mom, I hope it doesn't happen during your lifetime, but I am trying to come to terms with the fact that I will be burying a child".  We quickly left the topic, and to be honest until this weekend that comment was stored in the recesses of my brain.  

Many people told me last week that they were so sorry to hear about Harper when she was initially in the hospital, but to remember she is not Sonzee.  I actually started to believe them.  While everyone on our support page was beyond devastated when we learned our prayers were answered in a different manner than our hearts would prefer, I am sure I am not the only one who wondered what Harper's cause of death was.  With how selfless Harper's family has been throughout their journey with CDKL5, it is not surprising that her mother explained exactly what happened.  

Oh Harper, I am so sorry for all your little body had to endure.  I am so incredibly sorry to all of the CDKL5 babies/children who remain here on earth and those whose souls have already accomplished their mission.  I am so thankful for you Harper on so many levels.  I am so thankful that your parents have given your body to science as your final physical act in hopes to help your CDKL5 sister Sonzee and all your other CDKL5 siblings.  I am so thankful you are no longer suffering, that you are no longer locked in a body and experiencing seizures.  I am so thankful you will forever be part of our family.

We all know seizures and developmental delays are a very big part of CDKL5, but there is still so much research to do.  There are far too many children dying with this disorder for the small number of children who represent it.  There is no cure for CDKL5.  We all hold onto the creed, Hope-Love-Cure, with Hope front and center.  While all of our children exhibit the consequences of a mutated CDKL5 gene differently, until there is a cure, Sonzee and all of her CDKL5 siblings will also tragically complete their respective missions here on earth earlier than any of us will ever be prepared for.   

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