Kenton Fults was born Nov. 12, 2008. During the barrage of tests in the delivery room, he seemed fine, except he failed the hearing test. There were more hearing tests to determine the problem. His parents, Jared and Amanda Fults, asked about his stuffy-sounding voice and frequent coughing. As he grew older it was more and more obvious that his activity was slightly delayed, but every baby is different and develops at his or her own pace.

There was no reason to be concerned, for awhile, until tests finally showed Kenton had a rare genetic disorder called mucopolysaccharidosis I, or MPS I. It is caused by a defect in the gene that makes an enzyme needed to break down certain waste products produced in the body. The result is the waste accumulates in the cells of tissue and organs, eventually replacing normal cells and causing irreparable damage.

Further testing confirmed Kenton was Level 1, called Hurler syndrome -- his body was not producing an aldurazime enzyme, and would need extensive treatment. The lack of hearing had been a symptom, and eventually so was the clawlike position of his hands and tightness of his skin that Amanda still remembers as a disturbing feature. It was so noticeable on the hands of a little boy who was at an age when skin is soft and plump, not tight and dry.

The missing enzyme was introduced and he was to become an outpatient. "That lasted one week," Amanda said, "and then we were back in the hospital, and he never left after that."

Kenton spent the last five months of his life at Children's Memorial Hospital in Chicago. His mother left him only to shower. Her and Jared's family members took turns being with Kenton and his parents. There were never less than two family members with him at all times.

Kenton received a bone marrow transplant on Dec. 16, 2009. It failed on Jan. 4. He received a second transplant on Jan. 20. Due to the lack of resistance and conditions caused by the transplant, he was soon diagnosed with a cancer common in such cases. He had no immunity. Kenton died on April 1, 2010.

The first Kenton's Cause MPS Walk was held Sunday at Kickapoo Park in Lincoln. Walkers made two trips on the road that encircles the park, to make a three-mile walk. But it didn't really matter how far anyone walked; it was the memorial nature of the event that brought people out, and the willingness to donate to research that may someday find a cure for the devastating disease. A raffle, bake sale and other activities generated additional funds. Amanda and Jared Fults will send the collection to the National MPS Society in Durham, S.C. Next year there will be a second annual walk, and the walks will continue as long as research continues and children are affected.

Anyone wishing to donate to the MPS Walk for Kenton's Cause may go to the Logan County Bank, Amanda's employer, and make a contribution to the fund.

Reporting and pictures by Marla Blair

A giant arch made of the symbolic purple and white balloons marked the MPS event at Kickapoo Park on Sunday. Almost 100 people attended the Kenton's Cause MPS Walk to raise funds for research. A bake sale, face painting and purple hair extensions helped raise donations. Over 50 local businesses sponsored the event.

\

Tera McGrath (right), a hair stylist at Hair Plus, inserted purple hair extensions to anyone's hair for a donation of at least $10. Several women and girls took advantage of the opportunity to display their support for the cause, including McGrath.

Hair Plus contributed purple hair extensions and pinned them into anyone's hair for a minimum $10 donation. At the end of Kenton's Cause MPS Walk, Linda Martinie (left), Amanda Fults' grandmother and Kenton's great-grandmother, accepted the donation from Hair Plus owner Diana Pickett.

Kenton's mother, Amanda Fults (center, with purple shirt), is surrounded by family members after the Kenton's Cause MPS Walk. Family members continue to rally in support of the cause, as they did while Kenton was hospitalized. One relative came from Chicago and another from Moline to join in the fundraising effort on Sunday.

Back to top