Kristamae, Sunshine Girl

By

Emma L. Willey

Twenty -five years ago, I wouldn’t have dreamed a severely handicapped child would bring joy and sunshine to my life.  Then my granddaughter Kristamae was born on August 1, 1980, to our son Ray and his wife Katie.  Kristamae was a beautiful, dark-haired little girl who took her place in her happy young family, joining her two-year-old brother Jesse.  Her first year of life was normal and uneventful. We cherished our youngest grandchild, and I will never forget watching Jesse and Kristame playing together and interacting with each other. Jesse put her in the little wagon, and when he pulled her around she squealed with delight. 

When Kristamae didn't walk by the time she was 15 months old, her parents took her from clinic to clinic, and from one specialist to another, only to get confusing, frustrating multiple diagnoses. At first she was diagnosed as mildly retarded, and as time went on, developed other symptoms.  She became floppy and unbalanced.  She began vomiting and passing out.  Before long she lost interest in toys, and the doll I had given her for her first birthday that she hugged and kissed was left untouched.  It broke my heart one day when I discovered her sitting in her bedroom just turning her shoestrings around and around her little fingers, oblivious to the toys around her.  Obviously, she had a lot of pain at times and cried through many nights. 

Doctors tried different drugs for her seizures and other problems. Some things helped but others didn’t. The next diagnosis doctors suggested was epilepsy with cerebral palsy.  She had to have braces for her legs to help her instability.  By this time Kristamae had reached her fourth birthday, but we still didn't have any answers. What was wrong with our little girl?

  Finally, her parents took her to the Doernbecher Children’s Hospital at Oregon Health Sciences University in Portland, Oregon.  There, doctors recognized her symptoms as those of Rett Syndrome, a degenerative neurological disease that randomly strikes only little girls within the first two years of life.    Some of the symptoms are loss of verbal language, stereotypical hand movements, a wide-based stiff- legged walk, shakiness of torso and limbs, scoliosis, seizures, abnormal sleep patterns, constipation, and teeth grinding.

          There is no cure.  The outcome is a lifetime of full time care and dependency. Relieved to know what caused her symptoms, Kristamae’s parents began a new quest to find help for her.  They heard that Dr. Rett, the physician for whom the disease was named was coming from Vienna, Austria, and would be in Baltimore, Maryland, to see Rett patients.  Ray and Katie wanted to take their daughter to Dr. Rett., but   didn’t have the funds.

Shelley Kurtz from KVAL television in Eugene, Oregon, interviewed Ray and Katie, and the story of the new disease and one of the first diagnosed cases in Oregon also  broke  in the Register Guard, Eugene’s daily newspaper.  A fund drive was launched and so many responded with donations that finally enough money was donated so Kristamae could have the wheelchair she needed.  But they still didn’t have enough funds for the trip to Baltimore to see Dr. Rett.

In December of 1984, the doorbell rang and Katie answered the door to find a middle-aged man wearing horn- rimmed glasses.

 “Are you Kate Willey?” the man asked.

”Yes, I am,” said Katie.   

He handed her an envelope.  A note inscribed on it said, “From our children to your child.”  Inside, she found the answer to our prayers, two airline tickets to Baltimore. 

            “Who are you?” asked Katie.

            “Just thank God, and take care of your child”, he said and walked away.  Katie ran after him, but he disappeared into the night. We will never know who this kind stranger was, but that angel of mercy will always have our undying thanks.

When Kristamae was nine years old, I wrote in my diary, "At first we wondered why our family was chosen to have a severely handicapped child, but we no longer question it because we love her so much just the way she is!  Our Kristamae is a source of joy to her grandfather and me in spite of the fact she can't talk to us, can't run and play, doesn't play with dolls or do all the things other little girls do.  She shows us her love with her eyes and her beautiful smile, and that is enough for us.  We love her very much, and we are absolutely certain she loves us too.”

 Today, Kristamae is has graduated from high school and is 25 years old. She lives in a group home with others who need 24-hour care. Her parents take her home for weekends and holidays.  She gets to go shopping and on field trips with others.  She still walks in her own stiff-legged way, but cannot communicate with words or feed herself.  She still shows her love for us with her beautiful eyes and bright smile.  Kristamae brings sunshine into our lives.

The End