Stacy Spurlock
Because of the complexity involved in diagnosing it is hard
to pin down an exact number, but each year between 1,000 and 4,000 children are
born in the United States
with mitochondrial disease. These
children suffer from severe life devastating symptoms for which there is
currently no cure of effective treatment. Many of these children will not live
beyond their teen years. This is the
story of one child who suffered from mitochondrial disease, my child.
Chance was born a perfect baby boy on February 23,
2007. One week later he was hospitalized for the first time. That
would mark the beginning of the life that we would soon find ourselves thrown
into. We spent nine months fighting for the life of our child. We
fought medically to find a solution, we fought spiritually to stay strong and
believe, we now fight just make it through the day and remain a family intact.
Stacy is the mother to three wild little boys: Chase, Caleb
& Caden, her angel Chance, and Christian who is on the way. Stacy has been married for six years to Shane and they are enjoying
all the ups and downs of raising a family. Stacy and her family live in West Virginia and attend River Cities
Community Church. Stacy has earned her accounting degree; with a love of learning she remains a
student and will graduate this Spring from Mountain State University with a Bachelors degree in Health Science. She plans to begin graduate school at Marshall University in the fall of 2009 to earn her Masters degree in Health Care Administration. She is active in spreading the word about mitochondrial disease through an ambassadorship with the UMDF. This is her first book.
Chance is still here this morning. Yesterday was the most gut
wrenching, longest day of my life. I want to tell you about our
day; not for sympathy or anything else but because I have found
there to be a lack of information out there to tell you what this
will be like and how to do it.
When I went to bed on the night of the 20th I knew that Chance
would be spending his last night on this earth. I spent the entire
night trying to work up the courage to tell him he could go. I
found it at 7:42 am and so our day began...yesterday morning. It
was such a wonderful day I wanted to take him outside and get some
air. I was sitting in the rocking chair on the porch with him on my
shoulder when I noticed for the first time that the crackling sound
his breathing now makes had stopped. I leaned him down so that I
could see his face and there was mucus coming from every orifice.
He wasn't breathing. I ran inside, told Shane to get a wash rag,
and began to wipe his face. Chase came in at that moment and was
holding the little duck that reads Chance that hangs on a sign
outside. His name had fallen off. We freaked out, Shane told Tom to
get it back on there now. At first Chance was unresponsive but then
he started this awful jerky gasping. I wailed with each breath. It
was the most awful thing I had seen up to that point. Then his
breathing regulated and he was fine for several hours. We spent
most of our day outside just laying in the grass with him. Our
neighbors probably think we are crazy. It was really nice though
and the kids enjoyed playing, for a moment you could almost forget
that everyone was assembled to watch for Chance's next breath. At
about 4 p.m. we told everyone to tell him bye. We wanted to take
him into our room to hold him as he left us. He never went. I
decided to take him back outside. I didn't have my watch on but it
must had been around 5:30 or 6 because it was starting to get dark.
His hospice nurse showed up. I told her I didn't understand why his
body was still here. She told me we should say a prayer. I rocked
him against my chest and told him to fly. When I leaned him down to
look at him he was gone. His eyes were open, he was not breathing.
I cried out. Everyone came outside and my dad said a prayer of
comfort for the family. Several minutes had past and the nurse went
to get her stuff from her car to check him. It was then he gasped.
I cried out that he was breathing. I was in horror. They told me it
was the body and it would stop soon. He kept on gasping every time
I thought he was gone. I cried out "it was supposed to be peaceful,
this is not peaceful". For reasons I haven't yet figured out he
regulated his breathing and is still here. I did breakdown last
night and took him to the ER. I felt that his body was fighting so
hard I owed it to him to fight also. Shane rushed us there and the
whole trip I did what I promised I wouldn't do; I begged for a
miracle. I tried to convince God a miracle would have so much more
impact than death. I was scared and desperate...
