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
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.
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
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."
Information and to Donate to the Barth Syndrome Foundation
Casie Oldewage and Family