R.J.

RJ was born on August 22, 2001 with three cardiovascular conditions; the most serious was Wolf-Parkinson White Syndrome. He was seen early on by pediatric cardiologists and told he would likely need surgery at age four or five. Other than that, he could lead a healthy and normal life under the watchful eye of a cardiologist for the rest of his life. We were told he would never be able to play sports competitively, but he could play them. Then his appointments were spaced out from every six weeks to every three months and eventually to every six months. We thought he must be doing great... he certainly seemed like a healthy child—strong, vibrant and mischievous.

When he was 18 months old, RJ was found standing rooted in place, unable to move his limbs. At a night time clinic, nothing could be found wrong with him. The next day his pediatrician also could find nothing wrong with him. He seemed to really need his naps - but he was so active it seemed natural to his parents. Sometimes his naps were two hours long. Being first-time parents, they thought this normal.

RJ played hard and loved playing with Ace, a Rottweiler puppy of his Aunt Sue's. They were growing up together. We all loved watching them play—RJ would climb onto Ace and fall off, giggling. Ace loved it as much as RJ. On the night he died, February 11, 2004, RJ and Ace were playing together at Sue and Chris' house when suddenly he began tugging at his mom, Anne's jeans. He was tired, she thought. Tugging again, RJ said, Mommy, mommy and then flew backward—toward the floor. His back arched and his eyes rolled back in his head. He rolled onto the heat register, causing a bruise on his forehead and collapsed, vomit coming from his mouth. His parents were there in shock, desperately trying to give him CPR while his Aunt was on the phone with 911... but by time they arrived and did what they could, RJ was sadly gone. He died immediately of heart failure.

Later we learned from the autopsy report, RJ died of cardiac arrhythmias caused by WPW syndrome. He had been having mini strokes, TIAs, and his heart was enlarged. The electrical system in his heart was very compromised. He was only two and half years old. He never made it to four years old for having any surgery for his WPW and we had no warning that he might be in heart failure the night he died.

RJ had a happy life, but it was all too short. We miss him terribly and it our hope that other families will benefit from his story and will require more follow-up from their pediatric cardiologists.

In my book, "Suddenly an Angel, My Grandson's Story, My Family's Faith", I tell about the struggle my daughter had with her son's diagnoses. About our visits to the pediatric cardiology units, about her fear for his survival, and how our family dealt with his death. A percentage of the profits from my book are going to benefit C.H.I.N.. For the help they give to all the kids and families with heart disease (much greater even than RJ's) who need information and help.