My name is Leah Jean Miller. I was born September 29,
2004 at 4:30 am, at Community Hospital in Springfield,
Ohio, to my parents Scott & Nikki Miller I weighed 7lbs,
12oz. and I was 21in long.
mom says I was a happy baby. I was not making the
milestones of a normal baby, and I was diagnosed with
Spinal Muscular Atrophy at 9 months. The doctor told my mom
I would be lucky to live to two years old. This has not
stopped me. I have thrived in the worst of situations.
The day after Thanksgiving in 2005 I was admitted to
Dayton Children’s Hospital, with my right lung fully
collapsed and the left upper lobe collapsed. This was
the first day in a long three month hospital stay. While
I was there I was put on the bipap and oxygen for the
first time. After x-rays were done the doctors saw this was
not helping. I was then put on a ventilator. The
gave no hope; they did not know this disease well enough
to help. After two weeks I was sent home on hospice.
My parents did not give up on me. The very next day,
with the help of Families of SMA we found a doctor in
Cincinnati that could help. We left immediately. I was
admitted as soon as I was seen. They started cough
assist treatments (which helped immediately).
Two days later I got a bronchoscope which cleaned out
the lungs. This process went well, but the doctors were
concerned with my weight, and thought I might be
aspirating. They suggested a G-tube with a Nissan. On
December 19th, 2005 I received my G-tube. I was
recovering well, but I was kept as a precaution because my
right upper lung never fully reopened due to damage. I
got to go home on January 10th, 2006.
doing very well until April 22, 2006 when I coded at
home. Mom and dad performed CPR until the EMS arrived. I
was taken to Community Hospital in Springfield and was
intubated there. I was then care-flighted to Dayton
Children’s Hospital. When I arrived, I was awake. The
day after the episode doctors tried to extubate me but it was
too soon & I went into a coma.
I remained there for two days in a coma. My parents
requested that I was to be transported to Cincinnati.
Doctors here had little hope but I did not stop fighting.
This is were I remained until waking up in the ICU six
days later. Everyone said it was a miracle, especially
I have had a lot of issues since that episode. I have a
hard time sitting up. Breathing is difficult due to a
now floppy airway. I lost the ability to speak, move,
and play. With physical, occupational, and speech
therapy, I continue to regain things that I have lost. I
am starting to speak again, play with my toys, and I
never stop watching TV.
With God on my side and the support of great family and
friends, I am continuing to fight my on-going battle with
the disease of SMA until a cure is found.