Kristopher Michael Keen

EDITOR'S NOTE: The following is from the FALL 1997 issue of the Heart to Heart Newsletter

It's been nearly a year since our son Kristopher passed away.

Instead of holding Kris in our arms, we hold the memories of not only a loving son, but a heroic best friend. He is sadly missed by his family and all the people who knew him.

Christmas of 1992 was a very happy time for us. We were waiting for our son to be born, and on January 4, 1993 Kris arrived. Our roller coaster of happiness and fear had just begun.

Kris was four weeks early. His lungs were not yet developed and he spent time on a ventilator, but in three weeks our son came home. And then, just one week later, Kris had four heart attacks. We were told that he wouldn't live through the night, but by the grace of God, Kris began to improve. That's when the doctors first told us Kris had Williams syndrome. We concentrated on the immediate problem first - bringing our son home. Three and one half weeks later Kris came back home.

He was on six medications, administered ten times a day. We were very busy, and scared parents.

Kris had difficulty keeping his food down. So many times we would feed him only to have him throw up, and we'd start all over again. Kris was enrolled in Early Intervention and we began to learn more about Williams syndrome.

Kris had the typical delays of the syndrome - he sat at 6 months, rolled at 7 months and walked at 18 months. Kris never really talked clearly, he had a jargon of his own. He said only, "Hi, Bye, yes and no," but he understood everything you said or asked pi him. He loved people and everyone loved Kris. He was a very happy boy, and smiled all the time. He loved things with heels, working the VCR and watching the tapes. Music was also a favorite.

Kris' heart attacks destroyed the back wall of the left ventricle.

We went to the hospital frequently to have his heart monitored and the doctors were all amazed at how well Kris was doing.

He

was walking, talking, running, playing and getting in trouble - just like all three year olds! We were sure Kris was going to completely overcome his heart problems.

But then suddenly things changed. Kris started to have seizures in August of 1996. They were scary but medication got them under control. In October, an MRI showed that Kris' heart was beginning to fail. Scared and devastated, we had the doctors put Kris on the list for both heart and lung transplant. Kris stayed home with us for as long as he could, and during that time we sadly watched our happy, energetic boy go down hill. He tried very hard to smile, but he just couldn't. He was home until December 21st.

Doctors then performed an operation to allow medicine to go straight to his heart. This helped for a short time, but our brave little boy just couldn't fight any longer. On December 27, 1996, Kris passed away.

We came in contact with a lot of people during Kris' illness that we did not trust. We learned to ask a lot of questions and always express our opinion to the doctors. In all this time we knew about Williams syndrome and the problems that could develop. Most importantly we learned that you are what you are. This helped us to understand and love Kris. Kris' pediatrician, Dr. Heyrman, and cardiologist, Dr, Berger, helped us through a lot. They played a big part in helping to keep Kris with us for his 4 short years.

We will continue to support the WSA and children with WS, but our primary goal now is to make sure all people, syndrome or not, are eligible to be on the transplant list. We remember how it felt to be told that Kris would not be eligible for a heart transplant because he had a syndrome. Thankfully, we were able to locate another doctor who agreed to put Kris on the list, but an organ did not become available in the 10 short weeks that Kris had left. Our plea to all of you is to consider signing the back of your driver's license and "Give the Gift of Life!"

With Love,

Gary, Sue, Nick and Mickael Keen

To donate to the WSA in Kris's memory, click here