My name is Gina Dunne. My very dear and close friends Travis (Stretch) and Karla Boeckenstedt have been nominated to be this year’s recipients of the New Vienna tractor pull. The tractor pull is an annual event that helps out a family in need. It will be held Sunday September 8, 2013 in New Vienna, IA. Here is their story:
Stretch and Karla have a 4 year old (her birthday is tomorrow) daughter Sadie and an 8 old month old daughter Hailey. Hailey was hospitalized at the University of Iowa back in May and had surgery on her diaphragm. She was in the hospital for 10 days. She was released and sent home Memorial Day weekend. On July 5th she was re-hospitalized and has been in Iowa City since. She underwent surgery again in July on her diaphragm and a feeding tube was put in her stomach. Just last week Wednesday Stretch and Karla received Hailey’s diagnosis, a diagnosis that no parent ever wants to hear. Hailey was diagnosed with SMARD1. Spinal Muscular Atrophy with respiratory distress type 1 (SMARD1) is a subgroup of Spinal Muscular Atrophy. SMA is a degenerative neuron disease that affects the voluntary muscles used for activities such as crawling, walking, head and neck control, and swallowing. SMA is the #1 GENETIC DISORDER THAT TAKES THE LIVES OF INFANTS AND YOUNG CHILDREN. THERE ARE ONLY 60 KNOWN SMARD1 CASES WORLD WIDE. THERE IS NO TREATMENT. THERE IS NO CURE. In most cases of SMARD1 the child does not live to see two years of age.
I was contacting you to see if you would be willing to follow our story. I have started a Facebook event and it has grown to over 3,600 invited guests within 48 hours. The outreach from the community is overwhelming. Many local business are donating numerous items to go to our cause. If you are interested in seeing the Facebook page please visit https://www.facebook.com/events/561324920570149/.
I thought that this is a story worth telling. I appreciate your time and consideration in this matter. Please contact me with any questions, my information is below.
27162 218th St
Earlville, IA 52041