Sunday, August 3, 2014

The Race Against Time

We received the genetics results last week.  Will still has Leigh Syndrome.. We now know what part of the DNA has caused this.  Will has a Surf 1 Complex IV deficiency.  This affects his respiratory chain.  Not good. Will already has lesions in his basal ganglia AND in the lower brain stem. The neurologist told us that the average life expectancy is 5.4 years.  Will is just over 2 and a half years.  This is not acceptable.  My child deserves a life, a very long life.  Every day I think to myself, why him?  Why not me?  My heart aches so badly for my sweet boy.   Will right now is doing good, he has his moments, but all in all he is still the happy boy that I love so dearly.  We continue to fight for our little boy every single day.  In about two weeks we are making a trip to Houston to meet with another neurologist who specializes in Leigh Syndrome.  In fact, she has the only Leigh Syndrome clinic in the nation.  We are hoping she will give us a better understanding and what to expect with Will's diagnosis.  
There is a 25% chance that Lauren could have Leigh Syndrome.  The doctor will be contacting the genetics lab to see if they suggest that we have Lauren tested right now.  He explained that the testing is extremely expensive and sometimes the lab will test siblings for free.  I should hear back next week about the testing for her.
One day at a time, right?  I try and tell myself this everyday.  Enjoy every minute that we have with each other.  Time goes by too quickly.. Only if I could freeze time………. 

I love this picture of Will!  

Doug and Lauren, My favorite of Daddy & Daughter!



  1. We love you guys so much and you're always in our prayers. Will is such a precious little boy and does deserve a long life with his family. You and Doug are such great parents and you're doing everything in your right mind to make sure he has the best care in the world. I know that we can only pray, pray, pray...and we will.

  2. I love my sister and her family so much! I pray EVERYDAY for a miracle for strength and for more research for a cure! I have hope and faith!

  3. We love you Kasey, Doug, Will & Lauren! Praying for you every second of every day. We are here for you anytime, anywhere!