Listen to the acoustic version of "My Sunshine" (1MB) - Click here...


Our Story:

My mother had lost two sons to a form of Cardiomyopathy (heart failure.) Unfortunately, the disorder her sons had, hadnít even been given a name yet. In 1997, I had my first born. He was a beautiful, healthy baby boy, (so we thought.) Who would of known that I too, carried that very same gene that had affected my brothers and that I would also lose my son due to heart failure. Kade Michael July 31,1997- Sept 08,1997.

It wasnít until 1997, that Barth Syndrome was given a name and health professionals started paying attention to the disorder. In 1998 my nephew was diagnosed with Barth. An x-linked disorder that is passed from the mother to her son. Characteristics: Cardiomyopathy (heart muscle weakness), Neutropenia (weakness in the immune system), Muscle weakness and General Fatigue.


Though, Barth Syndrome has a name, there are still many boys who go undiagnosed. This is a very complex disorder. There are many different variations and unless your doctor knows of Barth Syndrome the chances of a diagnosis is poor.

November 13,2002
Christian was diagnosed with Barth Syndrome before birth. He was delivered at the University of Utah and then transferred to Primary Childrenís Hospital where he would spend the first few weeks of his life. Everyday brought on a new challenge but we managed to get his cardiac function under control through several different medications. We were then released to go home. Oh, it was wonderful, I had my little boy. It was like I was given a second chance to make it up to myself and to my son I had lost. I protected him and nurtured him and loved him with all the love one heart could possibly render. Through close supervision and medication Christian remained stable for two years, almost three and then he took a turn for the worst.


August 17, 2005 Christian went into heart failure. As you can imagine, I was horrified. The one thing I had feared most was taking place. That night, Christian almost went on life support. Have you ever had your life flash before your eyes? Christianís flashed before mine. I remember sitting out in front of the hospital listening to a voice mail on my cell phone I had saved for the past year of Christian saying," I love my momĒ, and then looking at my car and imagining me leave the hospital without him in his car seat. A sorrow that is inexpressible.

You wish you would of only taken more time out of your day to play and make more messes. I couldnít possibly fail him too. Fortunately, miracles do exist, and Christian recovered. Again, Five weeks later Christian went into heart failure, even worse than before. Apparently, heís my glimpse of heaven here on earth.

As of now we have no idea why heís having these occurrences. Christianís stable and we are able to have him home with his family, in hopes that his heart will recover and get stronger. It is through the efforts of the Barth Foundation and the Great doctorís up at Primary Childrenís that has made Christianís life possible. But until we understand more about this complex disorder nothings certain. Which is why I decided to share my story and song, something I hold so close and dear to my heart. So please support me in my efforts of raising funds and spreading awareness about this disorder. Imagine losing that sunshine that penetrates your very soul. I canít have that become my reality.

 

"A world with no sunshine is just no world at all."

 


For More Information and to Donate to the Barth Syndrome Foundation Click Here...



Sincerely,
Casie Oldewage and Family