Lauren and I founded The Dillon Flanigan Foundation in 2004, in honor of our son Dillon Patrick Flanigan. Dillon was born on October 24th, 2003 with a rare genetic condition that only affects one in a million children.
Dillon's skeletal structure is small (genetic condition) which limits the amount of air flow into his lungs and causes his breathing to be somewhat labored (restrictive lung disease). His breathing is also affected by the floppy airway (Tracheobronchomalacia). This resulted in Dillon having a Tracheotomy (he breathes through a tube in his trachea). Dillon also has severe reflux (Gerd). Although, Dillon is able to eat regular food he has a feeding tube (G-Tube) that supplements this nourishment. He has been in and out of the hospital since birth. Dillon is in stable condition and has normal intelligence. He requires 24 hours a day of nursing care and is on the ventilator 18 - 20 hours a day. His trache requires frequent suctioning and Dillon is at risk of Apnea and Brachycardia due to Hypoxia that may require resuscitation. In short someone needs to be awake 24 hours a day to administer medicines, breathing treatments and just to keep an eye on him.
Through all of this, Dillon has taught us about courage, patience and love. We realized during the months he was in the hospital, that we couldn’t have made it through those tenuous times without the love and support of our family and friends. What we witnessed during those long stays at the Connecticut Children’s Medical Center, was how many other families didn’t have the same support structure we had. And no matter how sick Dillon was and how fragile his condition remains, there’s always another sick child and another family needing support. This is what our youngest child has taught us and continues to teach us.
Scott and Lauren Flanigan
