Stephen’s Story

Stephen James Buches was born on August 29, 2015 to Amy and Steve Buches.  When Stephen was born there were concerns about the movements he was exhibiting.  After extensive testing doctors determined that Stephen had a rare genetic mutation to his KCNQ2 gene causing intractable epilepsy.  This meant Stephen would never walk or talk and need complete care his entire life.  While the first few years brought some challenges, Stephen’s family was able to adapt and overcome those challenges.  Stephen’s family did so much together despite these challenges: Disney World, Pirates games, beach vacations, Kennywood, Niagara Falls, Sea World, Great Wolf Lodge, Idlewild, Football State Championships, Dutchwonderland, fishing, epilepsy walks, Honorary Captain for a Pitt/Penn State game, and as many sibling sporting events that Stephen could make.

Stephen’s family worked tirelessly to give him the best life they could despite the challenges his condition and disabilities gave them.  Despite the families efforts, Amy and Steve knew that some major financial decisions loomed as Stephen got older and bigger.  The cost to continue to give Stephen the experiences Amy and Steve gave him weighed heavily on their decision making, not only for Amy and Steve as the parents, but also continuing to give Addison, Michaela, and James, Stephen’s siblings, the opportunities to participate in the things they love to do.  The financial burden of an accessible vehicle, ramps into and out of the house, or a house remodel to accommodate Stephen’s growing needs were a major concern for the Buches family.  Despite this, the Buches family continued to give Stephen the experiences that both he and his siblings enjoyed.

After Stephen’s passing on February 17, 2024, Amy and Steve made a decision to help families facing similar situations.  So, they started the Stephen’s Hulksters Angel Fund.  “Stephen’s Hulksters” is the Epilepsy Walk team name the Buches’ registered for the past 7 years.  They are hoping the tremendous support their community, family, and friends showed to them every year will continue under this familiar name.

Through this fund, the Buches family desires to help families with these significant accessibility needs ease the financial burden of providing experiences for their special needs child and loved ones.