My son Steven was born with TGA and a VSD in Clearwater Florida, in 1981. Steven lived pretty much symptom free for most of his life like any other boy. Although Steve could not play varsity anything, he did mostly keep up, but did get tired and ran short of breath quicker than a healthy child.

Steve had great yearly checkups and tests and was in great shape physically until 10/15/2005 when he suffered his first episode of congestive heart failure, followed two days later by a massive stroke that affected the right side of his body. Subsequently Steven has regained most of the use of his right side with some residual paralysis mainly affecting his hand, foot and leg. He cannot write well and has limited use of that hand.

Since October 2005, Steven has suffered at least 6 hospitalizations due to CHF episodes. His heart has grown to the the size of a football in his chest, with continued reduced output. Steven's activity has been severely reduced, due to fatigue. He has been fighting with Social Security because they claim he is not disabled and therefore will not list him as disabled. This fight is in appeals. The fact is, Steven cannot work and has not worked since October 2005. Steven is 26 years old and has sole custody of his 4-year old son who both live with us, and he has just received an ICD. He is being processed for placement on the heart transplant list yet SS still thinks he is not disabled.