Steelworker Jake Lowanse, a member of Local Union 10-00886, and his wife, Tracy, face special challenges in raising twin children who were born with a little-known neurological disorder called Chiari malformation.
“Our twin babies, Lydia and Wyatt, age 2, struggle every day with complications,” said Tracy Lowanse, who called the disease a life-threatening, debilitating condition. “We are in constant worry and fear.”
For those born with the disorder, the cerebellum, the bottom part of the brain that controls balance, descends from the skull and crowds the spinal cord, putting pressure on both the brain and spine.
There are many difficult symptoms such as headaches, balance problems and paralysis. There is no cure. A common treatment option is surgery to remove the back of the skull and make room for the brain. Many times, Mrs. Lowanse said, multiple surgeries are required.
To raise awareness and funds for research, the Lowanse family is co-sponsoring a local fundraising walk that is part of a national fundraiser called “Conquer Chiari Walk Across America.”
The walk will be held in western Pennsylvania on Saturday, Sept. 20, at Mammoth Park in Mount Pleasant Township, Westmoreland County. Registration begins at 11:30 a.m. The walk starts at 1 p.m. Click Here for an event flyer.
Everyone is invited to participate. A minimum donation of $25 is suggested. T-shirts will be provided to those who pre-register by Aug. 15 and contribute $25. To pre-register, go to the website, ConquerChiari.org.
Local organizers typically need sponsors, live bands/entertainment, food and water donations and volunteers to assist with walk day activities.
This is the second year for the local fundraiser. Last year, over 150 people participated, including members of Local 10-00886 at Menasha Packaging in Yukon, Pa. Menasha is a contributing sponsor.
To donate, make checks payable to Conquer Chiari and mail to: Tracy Lowanse, c/0 USW Local 10-00886, P.O. Box 212, Yukon, Pa., 15698
To find out more about this disorder and Conquer Chiari America, click here.
