We welcomed Taysen into our family on July 15, 2004. Our firstborn, we were over the moon in love and so thankful for a healthy child. He began sitting at 6 months old, and rolling shortly after that. He could not put much weight on his legs or lift his tummy off the floor. Taysen was diagnosed with hypotonia, and began physical therapy at 10 months. I remember one of the Dr.’s telling me that he would probably never be the best player on the soccer team, what i clung to, was the fact that he could be on a soccer team.
The next year, no progress was made with physical therapy. We took him to see neurologists, geneticists, rehab doctors with the same outcome. We were told there was no way he could have 2 rare genetic disorders; (since he was diagnosed with an adrenal disease shortly after birth) and to keep up with the physical therapy –he will eventually catch up. By then we had begun our own research and I will never forget the day I landed on the FSMA webpage. I knew in my heart, that was what Taysen had. I was so sick to my stomach that my baby, my perfect baby would never walk… would fight to breathe, would struggle with a simple cold, would face never-ending challenges his entire shortened life. We requested the blood draw for SMA and one week later, received a phone call to confirm our worst fear, Taysen had SMA. Based on his physical skills, he was diagnosed as SMA type 2.
There were many, many tears and feelings of helplessness during the next couple of years while we learned to cope with the fact that our son had a terminal disease. Taysen is our shining light. He fills our days with love and laughter. He has taught us things that we should be teaching him and he does it all with smile on his face. We will never stop fighting for our son, and will not imagine our lives without him. All of our SMA kiddos NEED this cure. They deserve it. Their families deserve it. We are making the commitment to raise money for Dr. Kaspar’s gene therapy program because it gives us much hope that we will see a cure or effective treatment in our son’s lifetime.