Effingham Daily News, Effingham, IL

Local News

June 14, 2014

Benefit to help boy with rare illness

SHUMWAY — As 6-year-old Hayden Apke chased other children around at Faith Lutheran Church Friday afternoon, his mother Stacey watched with mixed emotions.

“I can’t stop the kid from playing because he loves being active,” said Apke, who added her son’s enthusiasm for being active comes at a price. “I’ll have to carry him out of here tonight, because his knees and hips will hurt so bad.”

After being born with limited motion in various joints from his fingers to knees and searching for a diagnosis for five years, which has included seeing more than 10 doctors throughout the Midwest, Hayden was diagnosed last month with a rare disease that causes pain and swelling in all the joints in his body. Called Camptodactyly Arthropathy Coxa Vara Pericarditis Syndrome, Hayden faces a lifetime of joint replacement surgeries and heart procedures due to fluid gathering around the vital organ.

As his father Ryan, a military veteran, and his wife, Stacey, juggle raising five children with Hayden’s illness, the family is struggling financially.

“I’d rather work 24 hours a day than ask for help,” said Apke. “But all the medical expenses, travel and babysitting for our other kids when we drive to Chicago to see a specialist adds up quick.”

The Apke family, who lives in Shumway and attends Faith Lutheran Church, has always been garage sale enthusiasts. When a member of their church family found out they were having a garage sale to raise money for their ailing son, the church offered the space and support to raise money.

“All of this is the love of our church members and God to help this wonderful little boy,” said Merilyn Foster, who helped coordinate the garage and bake sale.

The entire gymnasium at Faith Lutheran Church was full of hundreds of items, including clothes, toys, cookware, furniture and baked sale goods Friday. The sale continues today from 9 a.m. to 3 p.m.

“I never imagined the help and dedication the church has put into this,” said Apke. “It’s really cool they helped do this.”

Upcoming regular trips to Chicago to see specialists to help manage the symptoms of the genetic mutation, which occurs after chromosomes create the wrong protein around joints in Hayden’s body, will likely be a strain on the Apke family.

“It has been mentally, physically, emotionally and financially draining,” said Apke.

As the sale was ending Friday, Apke said she will massage the knee and hip joints of her son.

Although fluid gathers there and Hayden experiences constant pain, Apke said she is comforted by the strength of her son, family and church.

“We will do whatever it takes to take care of Hayden,” she said. “Watching him and seeing how happy he is makes it possible to stay positive.”

During garage and bake sale today, a pork burger meal also will be served from 11 a.m. to 1 p.m. Donations are payable to First Mid Illinois Bank and Trust in Effingham.

 

 

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