The Pitzen Family has hopped on the TRAIN!!!!
Avery Lynn arrived in a hurry at 3:56 p.m. on April 30, 2008. She was perfect. Dark hair, dark eyes, kicking and screaming. All was going great. At 2 months old we took her in for her check up and shots and asked the doctor why she wasn’t trying to hold her head up and moving very much. At first we were told she was a lazy baby. Then she got really sick Sept. 2,2008 and we took our 1st ambulance ride to Madison. We almost lost her. That forced us quickly to figure out why she had low muscle tone or hypotonia. We saw a neurologist and she knew by looking at her what she had and they did a blood test to confirm her prediction. Sure enough it came back 2 weeks later being SMA, Spinal Muscular Atrophy type 1. Avery was diagnosed at 5 months old on October 7,2008. A day we will never forget..
That day changed our life forever. Over night we had to become doctors, nurses, physical, occupational, and speech therapists. Every doctor appointment meant another machine. Learning new ways to care for her. Doctors gave us little hope that she would survive past 2 years old. But there is hope on the horizon. Researchers are closer than ever to finding a cure. We believe that Dr. Kaspar’s Gene Therapy program is best option for a treatment. There is such promising evidence that it will be soon with proper funding so we have committed to raising money for his program.
~The Pitzen Family