Kevin Hakeneis

Some people with life altering disabilities live many years before incurring their malady while others are born with them. Kevin Hakeneis was born 6 weeks premature with a deadly muscle condition called congenital fiber type disproportion. It is a rare genetic muscular disorder that is accompanied by significant breathing and swallowing difficulties. He spent his first 8 months of life in a neonatal ICU unit and when he came home, he had a tracheostomy and was still on a ventilator. Many such children don’t survive infancy and those who do face a lifetime of complications. Over the years Kevin has had many surgeries, to expand his femurs, his jaw bones, to place a feeding tube, repack his intestines and correct his club feet. He has also undergone 6 surgeries to place rods in his back to correct severe scoliosis or curvature of the spine. Last December 16 he underwent a 10+ hour surgery for a complete spinal fusion, as he could no longer tolerate sitting in his chair long enough to go to school.

Kevin’s dad Keith has worked as a carpenter for the past 26 years, doing start to finish construction for Randy Dierks construction company in Fulda, Minnesota. Keith did everything from cement work to roofing on projects ranging from single-family homes to commercial buildings. Over the years Keith also used his talents to build a 30 x 30 addition for their home.

The road has not been easy however, and last year Keith and his wife Amy were struggling with finances to further modify their home to make it fully accessible for Kevin. The acquisition of a power wheelchair mandated a more sturdy ramp for entry/exit. Keith had built a ramp but it lacked safety railing, and there was not a secondary point of exit in the event of an emergency. In addition, it was getting increasingly difficult to transport Kevin, who now weighs about 80 pounds but gets around in a 300 pound power wheelchair. Transporting Kevin meant loading/unloading a 60 pound portable aluminum ramp onto the back of their liftgate before wheeling the chair up and lifting him in and out of the van seat. The needs seemed overwhelming and Keith and Amy struggled to come up with a way to help her son, given that family and community had already offered so much to them during Kevin’s first 14 years of life. After much research and even more thought, they turned to online fundraising vehicle Go Fund Me. The result was beyond their expectations as they raised $48,000 toward the $57,000 cost of a wheelchair accessible van with a power lift. They were still short however, and had not even addressed the needs for safety railing and secondary point of exit. After more online research, Amy found the Joseph Groh foundation.

Keith will provide the the skill set and labor required to make everything a reality, please see pictures below.