In June of 1998, Don and Barbara Schultz were told that their 17-year-old daughter didn't have more than a month to live. If there was any travelling they wanted to do, the doctors said, now was the time to do it. So they, along with their other children, Terris and Jordan, took Kyley-Jo to Disneyland.

Fortunately, Fate had other plans for their daughter. On June 28th, 2001, three years after the doctor's grave prognosis, Kyley-Jo attended her high school graduation ceremony in Barrhead. An even larger celebration took place two days later when the Schultz family rented a hall and invited everyone who'd been special in Kyley-Jo's life to attend a big BBQ celebration for her.

The invitation list was long. Over the years, many people have been instrumental in helping Kyley-Jo, from the doctors, specialists, nurses, hospital staff, supportive family members and friends, to the teachers and aids in the special needs program at her schools.

Born 20 years ago after a long and difficult labour, Kyley-Jo initially seemed fine. Even the doctors gave her a clean bill of health. When she was six months old, however, Kyley-Jo, unlike her sister Terris, didn't seem to be reaching any of the expected developmental stages. So her mother, intuitively knowing something was wrong, began visiting doctors.

It took some time for the doctors to listen. "All children are different," they said, as if Barbara was expecting too much from her youngest child. But when Kyley-Jo reached a year and still wasn't showing any signs of crawling, it became clear to others that something was wrong. A doctor discovered that her hips had never properly formed, so Kyley-Jo was placed in a full body-cast for a year. The Schultzs were worried, however, that their youngest daughter had other developmental problems.

When she turned two, she was diagnosed with cerebral palsy. Traditionally, however, people with cerebral palsy either get better or stay the same. So when Kyley-Jo began to regress 10 years later, the Schultzs were concerned. A series of tests suggested that their daughter had a rare condition called ataxia-telangiectasia. So the family rallied yet again, arranged the necessary referrals, and took Kyley-Jo to a clinic in Baltimore that specializes in the disease. There, they learned Kyley-Jo did not have it, and they returned home demoralized, feeling as if they were back at square one. Soon afterwards, however, a specialist in Edmonton diagnosed Kyley-Jo with Leukodystrophy. Each diagnosis has been accompanied by its own journeys of fear, frustration, hope, and discovery. At times, Kyley-Jo was the one who was the most positive. "Through all the sickness and everything she's been through," her mother says, "Kyley-Jo has never been one to say "poor me." We might say it, but she certainly doesn't. She knows she's different, but she takes it all in stride."

Kyley-Jo is very much a presence wherever she may be. She loves church, loves school, loves to shop, and loves sitting and bonding with her dad. She also has a wicked sense of humour and she loves to tease. Soon, she will apply her lively personality to her new job. This fall, Kyley-Jo, with the support of her aid, will be employed at the Barrhead High School as a mentor to students with special needs who are moving over from the elementary school. No doubt her humour and courage will help these new students welcome this exciting transitional stage in their lives.

Kyley-Jo has been blessed to live in a community that proudly supports and delivers excellent care for individuals with special needs. She has also been blessed with a wonderful family. Her older sister affectionately calls her "pussy willow," and her younger brother likes to make her laugh. There is love and joy in their home. When asked to say a few words about Kyley-Jo, her father paused for a moment before speaking. "There is always hope," he said, and his words were weighted with pride, gratitude, and love. "There is always hope."

Updated October 2003

Sadly, Kyley-Jo passed away on September 13th, 2003 at the age of 22. She is deeply missed by her family and all those who knew her. We will always treasure our memories of her.

A family friend, Myrtle Wegner, wrote the following poem, in memory of Kyley-Jo.

God's Newest Angel

The music was soft, the harpist played low,

A new angel had arrived from earth below.

The singing had stopped as she stood in her place,

Then the heavenly chorus rang out with "Amazing Grace."

Her smile was so radiant, her laughter rang out

And everyone cheered as she walked about.

No wheelchair, no crutches were needed now,

She climbed the golden stairs and humbly bowed.

For on the throne, all robed in white

Sat the Lord, who took her into His arms and held her tight.

Welcome home, my girl, my dear little one

Your work on earth is over and your new life has begun.

Your grandpa's and uncle and many more

Have watched you endure, from this distant shore.

So many prayers for you upward came

And hundreds cried out for healing in my Holy Name.

The strength I gave you was a blessing and your love did flow,

And now you're my newest angel, my sweet Kyley-Jo.