On February 14, 2007 Daniel aspirated on an oral vaccine during his six month well baby check. Daniel’s
pediatrician immediately had him rushed to Primary Children’s Hospital in Salt Lake City. Even though
the aspiration cleared, his pediatrician insisted that they evaluate him for “low muscle tone.”
Daniel was diagnosed with Spinal Muscular Atrophy (SMA). His specialist,
Dr. Kathyrn Swoboda, was very certain that Danile suffered from SMA. This diagnosis was verified with genetic testing.
SMA is a motor neuron disease. The motor neurons affect
the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.
Daniel has Type I SMA which is the most severe form. Most Type I babies pass away before their 2nd
birthday.
We were
devastated to learn that he had SMA. We were blind-sided by the diagnosis. We knew that there
was possibly a problem but had no idea that it could be something so devastating. Neither of us had ever
heard of SMA.
Since Daniel’s diagnosis we have had to educate ourselves about
this deadly disease. Everything in our life has changed dramatically. Even a simple
trip into Salt Lake City has now become complicated by taking medical equipment with us and pre-planning for any emergency
that my occur while away from home.