My Story

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.

 My 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 Childrenís 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 doctors 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.

I was 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 Childrenís 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 the doctors.

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.