Stories of Hope

Spencer Barry

My son Spencer is 10 years old. Spencer was diagnosed with Attention Deficit Hyperactivity Disorder (ADHD), Intermittent Explosive Disorder (IED), Oppositional Defiant Disorder (ODD) and a list of other associated disorders at age 4. Prior to his 5th Birthday he was diagnosed with Temporal Lobe Epilepsy (TLE or Partial Complex Seizure Disorder). Around his 6th Birthday he was diagnosed with Diabetes Type I (Insulin dependent). Around his 7th Birthday he was diagnosed with Bipolar Disorder NOS. Around his 8th Birthday he was diagnosed with Autism. It has been a very confusing journey if not challenging to say the least. We continue to deal with the crippling affects of all of these disorders and diseases combined on a daily basis.

Spencer has to endure blood checks 6 to 8 times a day, 6 to 8 shots a day, he takes 5 different oral medications twice a day that have side effects that are as complicated as the disorders that they control. When his schedule changes it takes even more to keep his levels within limits and even then it is not always successful. These schedule changes are also known as ŗvacations, non-school days, and holidays.˛

To make matters more complicated there is no one medical specialist that ties everything together. All of the specialists are specialists in their own areas and it is left to us, the parents, to tie and keep all of the pieces together. This is a full time job. In addition to this full time job, another full time job is trying to balance and educate all of the support organizations who are also not specialists, such as the school districts, schools, Regional Centers and mental health services.

To look at Spencer you would think that he is completely normal, which is at the same time a great blessing and probably the biggest handicap of all. Spencer has a wonderful warm smile and goes out of his way to be friendly, which is sometimes another problem as there are never any strangers to him. Spencer wants to be liked and participate as much or more than any other kid, but he does not know how and is at the mercy of all of his medical conditions, which are at best conflicting on any given day. Spencer is a Special Olympic athlete and loves to compete. Spencer loves to be active by skateboarding, bicycling, playing basketball, football, and swimming, to name some activities. As long as hešs active, hešs happy.

If we could cure only one of Spenceršs medical conditions that would make his life and ours so much more hopeful. With the possibilities of Stem Cell research it gives us a new hope where other approaches only continue to get our hopes up and let us down because the cures are sometimes more dangerous than the disease. There is so much positive that can come out of Stem Cell research that it gives us more hope to keep pushing on everyday even though we have to anyway. This is for Spencer.