Connor

2018 EMBRACING BRAVE Holiday Denver Recipient

Connor Underwood is a sweet 13 year old boy who is slowly losing his ability to walk, but this does NOT change his outlook nor disposition on life.  He is funny, charming and intelligent. His outlook on life is incredibly positive, despite knowing the "end game" of Duchenne Muscular Dystrophy.  How did this come about?  Well, we worked hard to help instill a sense of pride in his life, an attitude of "anything is possible" if you only try.  He has successfully adopted this into his own being and he truly amazes us.
At 9 months old, Connor started having some tummy issues. After waiting to see if this tummy virus would go away, we realized it wasn't just a typical tummy bug. Blood tests showed he had abnormally high liver enzyme levels which perplexed his GI doctor, since Connor did not appear to be in liver failure.  We spent a year chasing down various autoimmune diseases, but still no clue as to why his liver enzymes were high but everything else seemed normal. In early 2007, we were referred to another GI specialist at Georgetown University Hospital where Connor had been born in 2005.  This new specialist did a liver biopsy, which also showed normal, then he had a contrast MRI and more bloodwork. She was a great detective and consulted her colleagues who suggested she test Connor's CPK levels for Muscular Dystrophy. Sure enough his CPK levels were extremely high, and she had the daunting task of telling us that our son appears to have muscular dystrophy.
We received confirmation on August 17, 2007, from a neurologist at Children's Hospital in Washington, D.C., that he suspected Duchenne Muscular Dystrophy (DMD), which is a genetic disorder characterized by progressive muscle degeneration and weakness. DMD is caused by an absence of dystrophin, a protein that helps keep muscle cells intact. This is a life limiting disease, where the average life span is in the 20’s.  Advances in research about quality of life has improved this life expectancy from the teens to the 20’s, plus we are seeing more and more possibilities of slowing the disease down.
Up until 3 years ago, DMD didn't seem to have too much of an impact on Connor's physical capabilities. While he could not keep up with friends, he still could walk well, climb stairs and enjoy camping at the Great Sand Dunes National Park and Preserve.  However, over the last 3 years we have seen Connor steadily decline in his physical endurance and abilities to walk and climb.  As of today, he uses his power chair approximately 90% of the day.  No matter the occasional tough emotional moments, he maintains such a beautiful outlook on life.  He hopes to become a video game tester for Nintendo, find a love to marry and have kids, as well as explore this amazing world. Anything is possible...

Connor’s family plans to use the money raised to go into renovations for Connor's bathroom to make it more accessible for him.- 2018