The Peanut Gallery

Wednesday, December 9, 2009

Cold Case goes Solved

Wednesday, December 9, 2009
There was a point in time that I thought we would never have answers. I had come to grips with and accepted the fact that Kennedy's diagnosis would continue to puzzle all and would remain a mystery for all time. However, I am very excited to announce to the world that Kennedy is no longer a mystery. Her once cold case has now been solved by our amazing Neurologist. It was confirmed in our last visit on Thursday, December 3, 2009 that Kennedy has a Mitochondrial Disease. In fact she has Leigh's Syndrome or Leigh's Disease with Encephalomyopathy (a condition affecting the brain and nervous system [encephalo] and muscles [myopathy]). The prognosis for Leigh's Syndrome is poor , however, it is nice to finally be able to put a name to this awful disease that has been plaguing Kennedy from day one. I will provide a detailed post later in this week about Leigh's Syndrome and Kennedy's appointment with her Neurologist. But for now here is what I think........

Hello Leigh's Syndrome welcome to our family. We would like you to leave us, however, have accepted the fact that you are here with us for the long haul. We do not fear you nor are we intimidated by you. We have educated ourselves about you and know far more then you would like us too. We have learned to live our lives in harmony with you. You will not tear down our spirits. We will continue to live on and thrive in spite of you. You actually have allowed us to live our lives in such a way that we consciously seek out joy and laughter and we strive to live each day to it fullest potential. We do not feel sorry for ourselves or for our daughter Kennedy. This is going to be a tough fight but we feel like we have already won the battle!!!


3 comments:

l said...

Once again you have amazed me! Always knew you and Brian were chosen to be Kennedy's mommy and daddy for a reason and over and over again you demonstrate why. You inspire so many with your strength, wisdom, and resolve. God bless you always - I love you all!

Aunt Lynette

Cindy's Garden Thoughts said...

Fight On Bonomos! We love you and your winning spirit!

Karen said...

RAH, RAH, RAH..We will always be there with you in the fight. Keep it going girl!