Ella wants a bike so she can be outside like the rest of the kids
Ella Rae Wilson was born on 6/12/2007 she was born with a head full of red hair that made everyone smile. After two days in the hospital, we were sent home with our newborn baby girl. She was a very tired baby and I didn’t think much of it. You know the old wives tale “Don’t wake the sleeping baby.” I didn’t wake her. When she did wake she was crying and very chilly, her mouth was dry and she would not
eat. I was worried about her so I took her temperature. It was 93 degrees, which is very low for a newborn. Now I was really scared. We called the doctor and were told to go to the nearest ER. Before I could even think we were called back and told to call 911 and go by ambulance to Nationwide Children’s Hospital. The nearest ER was not prepared to handle a sick 2 day old baby. My head was spinning I didn’t have time to think. Was my baby girl really that sick? The ambulance arrived and we started towards the hospital. I will never forget how scared we were on that ride. I heard the EMT assessing Ella that the driver needed to step it up a bit (meaning drive faster) and I knew things were not good. Ella was bluish purple and they could not get an IV started. When we got to the hospital they pulled her out doing chest compressions. My heart sank, all I could think was we had lost our beautiful baby girl.
We did not lose our little angel that night. She is a fighter and has fought hard for her life. As her parents, we believe our little girl is very strong and willful. She was diagnosed with a very rare metabolic disease called Glutaric Academia Type II. Glutaric Acidemia type II is an inherited disorder that interferes with the body's ability to break down proteins and fats to produce energy. It usually appears in infancy or early childhood as a sudden episode called a metabolic crisis, in which acidosis and low blood sugar (hypoglycemia) cause weakness, behavior changes such as poor feeding and decreased activity, and vomiting. These metabolic crises, which can be life-threatening, may be triggered by common childhood illnesses or other stresses. Her metabolic crisis occurred on day two of her life caused severe brain damage. She is treated by several doctors and she has had multiple stays in the hospital for colds, flues and pneumonia. She has had two surgeries for her stomach. Her most recent surgery was in June 2011 when she had corpus colostomy (brain surgery). Prior to surgery we were having 40-50 seizures a day. After surgery we have 5-8 on a good day (meaning no sickness, cold or flues). We have had such an improvement and Ella is a happier girl now. She smiles more and is more vocal; every day we see an improvement. She is moving forward developmentally and even though we are only seeing tiny baby steps forward, it is a step in the right direction.