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One year ago this weekend, Amanda and Trampus Craig celebrated the first birthday of their son, Brinley, with a community event to raise funds for the disease that would take the infant’s life just two months later.
Brinley was born with Type 1 mucopolysaccharidoses, also known as Hurler’s Disease, a hereditory disease that causes the absense of an enzyme. The lack of the enzyme can lead to damage to internal organs, bones, joints and the respiratory and nervous systems.
From 6-9 p.m. Saturday, Feb. 27, the Craigs will celebrate what would have been Brinley’s second birthday with a similar “Bash,” again to raise funds for researching a cure for the disease.
Last year, Brinley was well enough to attend his party for a little while. But this year, family and friends must party without him.
“It is unbelievably hard. The more I prepare for the fund-raiser, the more difficult it gets,” said Amanda Craig about planning the party knowing her son will not be there. “But, we still want to help these kids. ... We really want to help and give back, because so many people helped us.”
The Bash, to be held in the Madison Township Firehouse on Michigan Road in Madison, Ind., will include a meal of chili and other soup, along with live music, games and inflatables for the children and raffles.
The local band Split River Rockers is signed on to play its 1950s-style rockabilly.
Craig said they are hoping for enough donated items to give away two door prizes each hour for children and adults. There also will be raffles and her mom’s famed Brinley’s Bash Jalepenos.
“They are sweet and good with cream cheese,” Craig said, and were a huge hit last year.
Cost for the bash is $15 per adult and $10 for the first child; a family with additional children will pay $5 for each. “We will work with anyone who can’t pay that much,” she said.
Proceeds benefit the Minnesota Medical Foundation’s Hurler’s Disease research. To donate directly online, go to www.mmf.umn.edu/give/index.cfm and search for The Brinley Craig Fund.