Chris was born on May 7,1990, and the doctors said he was perfectly healthy. Three days later he wouldn’t wake up, and we rushed him to our pediatrician where we were told Christopher probably wouldn’t live another 30 minutes. Miraculously he survived and was taken by ambulance to Children’s Hospital. A blood test showed no detectable level of glucose. IV’s were started, and Chris woke up and seemed OK. Chris had to endure a blood sugar test every hour around the clock for several days. They usually got the blood out of one of his tiny toes which were soon black and blue. Chris would start to scream as soon as someone touched his foot. I can still see the tears and terror in his eyes.

The doctors postulated that Chris had a viral infection while still in the womb and was too weak to fight it. The infection scarred Chris’ heart, and he was diagnosed with restrictive cardiomyopathy. Because his heart function was greatly reduced, fluid backed up into Chris’ lungs, and he had to start a life long course of strong diuretics. We had to change his soaking wet diapers up to four times in an hour. There is no cure for restrictive cardiomopathy, and Chris would need a heart/lung transplant if he was to survive the first year. Already Chris showed what a fighter he was and came home after almost a month in the hospital.

Somehow this tiny infant with a death sentence would grow into a wonderful loving and happy little boy. He seemed so happy with life that we elected to postpone the transplant as long as possible and to spend every minute we could with Chris. He was a boy through and through and loved to get into everything. He had to try a lot harder to keep up with other kids but never got discouraged and never felt sorry for himself. His only regret was that he wanted to be able to run really fast, at least once. But his weak heart would not let him. He was able to go to school and despite being the smallest child (his heart would not allow him to grow) all the other kids looked up to him because of all the hospital visits he had to endure and his bright and cheerful personality. His favorite pastime was building and playing with legos. His gym teacher even called him “The Lego Kid.”

Chris’ heart grew progressively worse until Christmas 1996 when Chris came down with bronchitis. This was more than his heart could take and Chris was unable to lie down without losing his breath. His doctors at Children’s wanted Chris admitted but I was able to convince his cardiologist to treat him as an outpatient. We had to call the doctor twice a day and I had to take Chris to the hospital twice a week. Chris was unable to return to school until March, and he had lost the little stamina he had and was unable to take gym class or recess. Everyday, his teacher let Chris pick two classmates to stay inside with him after lunch, while the other children had regular recess. Chris’ heart never fully recovered and even with higher doses of diuretics fluid was building up around his heart and his life was in more and more danger. Still Chris continued to be very happy and understood everything that was happening and could happen to him. We realized we could no longer wait and began preparations for a transplant.

We were told that a conventional heart transplant was not an option for Chris. His poorly pumping heart had caused pulmonary hypertension. While his own heart adapted to squeeze so hard to force blood into his lungs, a new heart on its own would not be able to do the work immediately. Chris would probably die on the operating table. Surgeons decided his only hope was a heterotopic, or piggyback, transplant. Only about 20 American children have had the procedure, and Chris would only be the second child at Children’s. Doctors left his own heart in place and added the new heart to make it easier for his system to pump out the blood. We explained all this to Christopher and he understood more than any 7 year old should have to. Chris and I prayed fervently that he would not need the operation. When the call came that a donor was found I asked his cardiologist to do one last chest X-ray to make certain we hadn’t received our miracle. Chris’ heart was not healed and on October 8, 1997 Chris had his history making transplant. Chris was in Children’s Hospital for 3 weeks and amazed me and the doctors with his courage and strength as he recovered from surgery.

For the first time in his life, Chris found out what it feels like to have energy. Once he was fully recovered he raced his 4 year old sister up the driveway and Chris actually won a race. His wish to run really fast, at least once, finally came true. Unfortunately that brief moment was the only chance Chris would ever get. Soon after the transplant the doctors discovered that the donor heart carried the Epstein-Barr virus, a common virus in humans that causes mononucleosis. Because of the immune suppressant medication Chris had to take to prevent rejection, he had no defense against this virus. This virus caused the horrible disease, post-transplant lymphoproliferative disease, or PTLD, that killed our wonderful little boy.

By January 19,1998 Christopher was back in Children’s Hospital for treatment of PTLD. From the virus Chris had ulcers throughout his GI tract - from the esophagus to the stomach and into his small intestine. He also had tumors growing in his lungs. Even in pain and back in the hospital Chris never complained. When the doctors asked him how he felt his answer would always be the same, “pretty good”.

To treat the PTLD, they stop the patient’s anti-rejection drugs and hope his awakened immune system attacks the PTLD and not the new heart. But soon Christopher was breathing too fast-- a heart biopsy showed he was having severe rejection. He had to take high dose steroids to fight the rejection. The doctors decided to do a lung biopsy to determine if it was truly PTLD in his lungs. Chris had to be heavily sedated and put on a ventilator for the biopsy. Something went wrong with the procedure and on 2/3/98 they lost Christopher’s pulse, and his two hearts stopped beating. Chris was resuscitated and seemed to be okay. Once again Chris had fought back from death. Next they tried chemotherapy to kill the large PTLD tumors growing in his chest, and he seemed to be getting better. Chris’ beautiful blond hair fell out, and his white blood count dropped to zero. Chris was exhausted but his spirit was very strong. When asked how he felt Chris would still respond “pretty good”. Slowly the rapid breathing returned until one night, in a panic, Chris told me he couldn’t breathe. Chris was in a regular room and the doctors and nurses waited all through the night before deciding to send Chris back to the ICU. They knew what a fighter he was and thought maybe he could get through it but fate was against us. As they wheeled his bed to intensive care Chris held my hand and said “Daddy, I love you very much”. After struggling all that day Chris was put on the ventilator.

On March 10,1998 Christopher’s hearts stopped again; he fought back again but ended up on a heart lung machine. And then a fungal infection, high fever, kidney failure, dialysis, and more chemotherapy. His last CT scan showed that his lungs were solid with virus-induced tumors. On March 24,1998, Christopher’s hearts beat out their unique rhythm for the last time, falling silent at 12:03AM. To my intense relief, I was by Christopher’s side at that moment. I was afraid that Christopher’s spirit would come out of his body and look around and ask “Where’s my Daddy?”

On March 27, Christopher’s funeral mass was celebrated at St. Sebastian Church. His second-grade classmates attended and the children’s choir sang. After the mass we went outside to find about 200 students lined up along the driveway, forming an honor guard. It was absolutely beautiful and incredibly quiet.

My biggest fear now is that Christopher will be forgotten. Realizing this, my brother-in-law who is the captain of our relay team, Billy Manning, rode his bicycle across the country two summers ago from California to New Hampshire in Christopher’s memory. When Billy asked me if I would be interested in running a relay in the Pittsburgh Marathon last year, I thought in some small way I would be repaying him for his tremendous bike ride. But when he said that I could name the team in Christopher’s honor, I was really excited. Last year was my first marathon ever, and this year will be my wife’s first marathon as well. We are training as much as possible to make Christopher proud of me. I am making T-shirts for the team to wear with Christopher’s picture for everyone to see.

When I run I’ll be remembering Christopher’s wish to be able to run really fast, at least once. I’ll have tears in my eyes but will hear Chris cheering me on in my head. With an angel leading the way, I think I’ll do very well.