A little boy with a rare medical condition has received some big-league help from Alex Gordon and other professional athletes with Nebraska ties.
Gordon, who plays for the Kansas City Royals, and other pro players were among the dozens of people who contributed to a charity event for 6-year-old Drew Sillman, the son of Mike and Cara Sillman of Gretna.
The softball tournament, auction and other fundraising last month raised $50,000 for Drew’s family to help pay medical bills and the cost of traveling to appointments and to participate in research in such places as Iowa City and Rochester, New York, said Larissa Codr, a family friend. Codr helped organize the fundraiser.
Drew was diagnosed in May with juvenile Batten disease, an inherited fatal neurological condition that affects vision and can cause dementia and seizures.
Cara Sillman said the backing from the Gretna community and elsewhere has been overwhelming.
“It’s really unbelievable,’’ she said. “It helps us get through it.”
Drew’s dad, Mike Sillman, has a special tie with Gordon and Brian Duensing, another baseball player who contributed to the fundraiser. Sillman played baseball for the Huskers with both athletes.
Gordon donated items to the auction, including suite tickets at Kauffman Stadium in Kansas City. Duensing, who played for the Chicago Cubs this season, contributed an autographed mitt and made a cash donation.
Former Husker football player Andy Janovich of the Denver Broncos donated a ball signed by his team. Boxer Terence “Bud” Crawford donated autographed “Team Crawford” hoodies.
Codr said she is grateful not just for the help from the athletes but to the many others who contributed money and auction items, played in the tournament or worked as a volunteer during the event.
“We had some awesome people helping out,’’ she said.
Cara Sillman said Drew, a first-grader, was diagnosed after testing at the University of Iowa Hospitals and Clinics. The life expectancy for children diagnosed at Drew’s age is late teens or early 20s, she said.
She said vision problems were the first sign of Drew’s condition. He was having trouble catching balls or even recognizing his parents’ faces when they would stand outside his school to pick him up.
He was fitted with glasses, but they didn’t solve the problem, and he is now legally blind, his mom said.
Drew, who receives care at Children’s Hospital & Medical Center in Omaha, is still able to do many of the things that little kids love, like kicking a soccer ball, jumping on a trampoline and playing with Legos.
He especially enjoys playing in the backyard with brothers Colton, 8, and Ryder, 2. His brothers have been tested and do not have the disease, their mom said.
Cara Sillman said Drew’s diagnosis was devastating, but the family is trying to remain hopeful. She said there is research underway that she hopes could lead to treatments.
The Sillmans, who grew up in Omaha and met at Millard South High School, said their friends, family and other supporters are making it easier to face the challenge.
Said Mike Sillman: “We are definitely not in this alone.”
Article originally published on www.omaha.com by Michael O’Connor
Picture credit: PATTY SAMUELSON PHOTOGRAPHY