My name is Jill. I live in Colorado, with my husband Paul, and two sons, Cody and Michael. ASAP has been a blessing to us all.
In 2006, our youngest, Michael, was pre-diagnosed with spina bifida, by a new pediatrician at a normal check up. After several days of intense tests at Children’s Hospital, and massive amounts of prayer from friends and family, we learned that it was an incorrect diagnosis. Both of us being teachers, we had already researched projects and associations, such as yours, to educate ourselves about the condition. We were so thankful that he would not face certain challenges but had no idea how much that incident would prepare us for a future journey.
In early Spring of 2008, our oldest son, Cody, was playing ice hockey. Even though he had open heart surgery at the age of 2 to repair an ASD, he was a healthy young man, involved in every sport possible. During a hockey game, he received an injury that split his helmet in half. Medical staff examined him and diagnosed him with a concussion. But as days went by, Cody’s symptoms were not dissolving. He had new and more severe symptoms. His doctor ran more tests and within hours, Cody’s results were sent to a specialist at Children’s Hospital. The diagnosis came back as Chiari malformation. Although it is the mildest form of Chiari, Cody was devastated. He had symptoms for quite a while, but blew them off to sport injuries. After all, he was young and at an age where he felt invincible. He had traveled the world to build orphanages, give care to, and feed the homeless. He was graduating high school the following year and was making college plans, but suddenly he saw all of that coming to a complete halt.
We needed to educate him about this condition.
So we headed back to your website, and shared every ASAP newsletter with Cody. He met some fabulous (and one not-so fabulous) doctors, and found resources for support. But it was your website and personal stories from those battling similar daily challenges that helped the most. Even though our case is one of less severity, in our minds, that does not lessen the pain. However, we are so blessed: blessed to have found your project and the wonderful people fighting each day to conquer Chiari.
Since Cody’s diagnosis, he successfully graduated from high school at the top of his class. He has sailed on a medical ship in the South Pacific and delivered a baby in Papua New Guinea through the organization, Youth With A Mission. (It was his first Chiari visit to Children’s Hospital when he realized he wanted to help others and work in medicine.) Over the past year or so, he has been taking general ed college classes on line. In 2013, he moved out and got an apt with a friend. He works in a restaurant and plays his guitar in church. He has adapted well, and knows his limits.
At a family dinner just last month, Cody announced that he is going to apply to Nursing School. “After all,” he says, “the world needs way more male nurses!” (He has kept a great sense of humor through everything.) We couldn’t be more proud. We believe that everything happens for a reason, and if this “thorn” of Cody’s is the impetus of him helping others, then we will take it with grateful hearts.
We can’t thank you enough for what you do. My husband and I are both middle school teachers and will retire in the next few years. We hope to be involved in ASAP in some way when time allows. Who knows what we could get going in Denver!!