Western Springs family funds research for a cure
Kirby Wilson is shown with her parents, Sue and Brad Wilso, at their Western Springs home. The family is holding an annual fundraising event with a dinner and dance in February. | Buzz Orr~Sun-Times Media
How to help
Dine: The Sweetheart Dinner Dance, 7 p.m. Feb. 8, Ritz-Carlton in Chicago
Donate: Checks payable to The Children’s Medial Research Foundation, PO Box 70, Western Springs IL 60558
Visit: www.curekirby.org, or call (708) 784-0631
Updated: March 1, 2013 6:22AM
WESTERN SPRINGS — Kirby Wilson and her parents look forward to the return of spring and outdoor walks.
“We’ve always loved going on little adventures in forest preserves,” said Kirby’s mom, Sue Wilson. “Our only limit is the weather. Kirby is more sensitive to hot and cold so we have to be careful of extreme temperatures.”
Spring also will bring Kirby’s 22nd birthday April 15 and her last few months in the transitional services program at Lyons Township High School for students with special needs.
Sue Wilson and her husband, Brad, have begun planning the next steps for their daughter, who lives with Sanfilippo Syndrome, a rare genetic condition causing a buildup of substances that harm the body. It has gradually robbed her of the ability to speak and move and resulted in some brain damage.
“LT has been such an incredible program. Kirby has had a one-on-one aide who helps her and provides stimulation,” her mom said. “I’ve looked into adult day programs, and nothing comes close to what she has at all.”
One program sounds promising in Elgin, and Sue Wilson is considering making the 45-minute trip and enlisting other drivers several times a week. She also plans to offer therapy and activities at home.
But the best post-high school opportunity of all would be the chance to be included in a medical trial to receive gene therapy that could stem the effects.
“I’m not sure our child will ever be accepted into a trial, but we will fight for the opportunity,” Sue Wilson said.
Chronic ear infections as a young child left Kirby’s speech delayed. Further testing confirmed a diagnosis of Sanfilippo B, one of four types. Sue Wilson assumed the condition was a kind of learning disability.
“Then they told me she will become hyperactive, have sleep disorders, lose the ability to speak and die by the age of 12,” Sue Wilson recalled.
Research on such a rare genetic disorder didn’t draw much interest or money, so the Wilsons launched The Children’s Medical Research Foundation. In 18 years, the group has raised awareness and $3.5 million in grants to several research centers.
The couple got as much therapy as they could for Kirby, who learned to recognize words, do simple math problems and loved to play soccer. Her speech faded by the age of 9.
By age 16, a secondary problem, dystonia, caused severe and painful muscle spasms and confined her to a wheelchair. But Kirby’s health has been stable the past three years, her mom said.
“I really believe with all the knowledge gained over 18 years, they’ll get it,” Sue Wilson said of her hope for a cure.