Girl taught family how to really love

Crystal Jones was diagnosed with rare genetic disorder at age of 3

Idaho StatesmanJanuary 28, 2007 

Diaper rash cream works great on babies.

Unfortunately, Crystal Jones had to figure out the hard way that the gooey ointment wasn't intended for her Cabbage Patch doll, Emery. As a young girl, she smeared Desitin all over her polyester-stuffed friend.

"Even after two trips through the washer, (Emery) was still kind of sticky," said her mother, Sue Jones. "But he never got a rash."

Sue and her husband, Jim, have many stories like this about their daughter who died Jan. 18 at age 17 in Meridian. Friends and family will share their memories of Crystal during a Celebration of Life at 2 p.m. Monday at Alden Waggoner Funeral Home in Boise.

Crystal was diagnosed with Sanfilippo Syndrome, a rare genetic disorder, at 3 years old. The average life span for someone with this disease is 14-years, according to Sue.

"Our initial reaction was shock. That was probably worse than now," said Jones. "Because you've got this beautiful baby girl, and she's perfect until that point when (the doctors) tell you she isn't. It was devastating, incredibly devastating."

Sue and Jim Jones started researching the disease, which they had never heard of prior to the diagnosis. Their search for answers came as a distraction in the wake of an unsettling reality that Crystal would someday die at a young age.

"She led us down a path, which we didn't choose," said Jones. "We met a whole world of people that we would have never met otherwise."

The family became good friends with doctors and other support networks all over the country, including the Make-a-Wish Foundation. In 1999, the Foundation sponsored a trip for the Jones' family to the Walt Disney World resort in Florida.

"That was the best trip," said Sue Jones. "(Crystal) was still able to walk with assistance and she was still eating. But oh yeah, the sights, the sounds, the train ride, the Dumbo Rides — there were lots of activities there. She was always looking around at something."

Although Crystal did not remember the trip after a few years, the family still looks back on her "wish" with fondness.

"Some people might think it's a waste of time sending a child who is disabled on a big vacation, but what it does is form in your mind family memories that are all happy instead of with doctors and hospital stays. It brings something fabulous to life."

Crystal was never a scholar. She did not learn her numbers or how to read. But her family says she learned the most important of all life lessons — how to love.

"I picture her with her grandparents," said Sue Jones. "That's what I picture ... them welcoming her the day she passed. And being able to walk again."

Both parents smile at that notion.

In Remembrance is a weekly profile of a local resident who has recently died. Contact reporter Monique Bosolet at mbosolet@idahostatesman.com or 672-6716.

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