Jordyn Marie McCombs

EDITOR'S NOTE: The following is from the Winter 1994 edition of the Heart to Heart newsletter

Some friends hold our hands for just a short time, but live in our hearts forever. Our sweet angel, Jordyn Marie McCombs, will live on in the hearts of many.

We hope that through the following brief thoughts you will realize how very special she was, and still is to many people, especially her mother, father and little sister.

Jordyn was born June 20, 1989 and left this earth on May 28, 1993. Her mission was brief, but she gave and received a lifetime of love and warmth. Jordyn was diagnosed with Williams syndrome in October, 1991. Williams syndrome provided Jordyn with a condition to perform her earthly mission - to give unrestrained, unconditional love to everyone around her. Her greatest frustrations in life came when this love was misunderstood and not reciprocated.

All who knew Jordyn could not help but to be touched by her genuine friendliness and love for the very simplest things in life. Blowing bubbles, watching Barney, and riding the bus to school were experiences which Jordyn reveled in. Empathy for the pain of others and a warm embrace for a total stranger were two trademarks of Jordyn's loving personality.

When Jordyn was initially diagnosed with Williams syndrome, a very slight narrowing of the aorta was detected. Whenever she visited the doctors, we insisted that Jordyn's blood pressure be checked to monitor any changes which could indicate heart difficulties. Jordyn's pressure was always normal and once she reached her second birthday, she was basically a healthy child.

May 28, 1993 started out as a day like many others. Jordyn was her active, enthusiastic self. She was happy, healthy and very much alive. After dinner she was outside playing " squirt bottle fight" with her dad and younger sister. She was running and giggling, exclaiming "squirt me again, Dad, squirt me again.* After playing for awhile, Jordyn ran into the backyard with her dad following behind. As she was laughing, she turned to her dad with a huge smile on her face and fell to the ground. Her body went into convulsions for about one minute and she was gone - in one brief moment.

Because Jordyn's death was sudden, with no apparent cause, an autopsy was performed. While there is still no "concrete" cause of death, Jordyn did suffer from cardiopulmonary arrest which the coroner reported to be a "probable" consequence of narrowing of the coronary arteries. In the report, the coroner goes on to say that "the combination of abnormalities present in Jordyn's coronary arteries has not yet been described, but may represent one portion of the spectrum of cardiovascular abnormalities associated with Williams syndrome." This cause of death was a shock to us. We have read almost everything there is to read on Williams syndrome. Through all of the tests and exams, no one ever mentioned narrowing of the coronary arteries - probably because this is a rare condition in children, not commonly associated with Williams syndrome.

We still have no definite answers in regards to Jordyn's coronary arteries. Her heart has been sent to the Mayo Clinic for further tests. If, for certain, narrowing of her coronary arteries caused her death, it may have been a condition unrelated to Williams syndrome. Our hope is that, through further research and examination of the syndrome, more can be discovered about all the cardiovascular abnormalities associated with it. We realize that much has been done, and applaud the discovery of the gene that causes Williams syndrome.

We have donated Jordyn's organs to the University of Utah Genetics clinic so that some glimmer of hope may come from her death.

One of Jordyn's preschool teachers wrote, "I could always look to Jordyn to remind me of what is truly important in life". Jordyn reminded us that life is a precious gift to be cherished. She helped us realize that potato bugs make good pets, snowmen can be good friends and the most important thing we can accomplish in this life is a love for ourselves and others. We look forward to the day when we can be embraced by her small loving arms.

We would like to thank the WSA for the invaluable system of information and support which you provide. Through you we have met many wonderful people. We look forward to your newsletters, and continuing to be a part of your organization. It helps to be involved - that way we still feel very connected to our daughter.

Love and cherish your child with Williams syndrome - whether they be 50 years or 5 months old. They all hold a portion of love and innocence which is missing in this world.

Quint, Trudy and Braydee McCombs

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