Lupulin Brewing of Big Lake hosted the annual PKS Awareness Day last Saturday to present a night of education, awareness and support for kids with the syndrome. The event ran Saturday in lieu of PKS Day, Dec. 4.
PKS Day is part of the celebration of the seventh annual, officially-recognized PKS Day in the state of Minnesota (proclaimed by Gov. Mark Dayton).
PKS (Pallister-Killian Syndrome) is a chromosome abnormality when a tetrasomy (four copies) of the short arm of chromosome 12 (12p) occurs for no known reason. Many of the afflicted kids have global involvement that result in severe, profound developmental delay, deaf blindness, seizures, low muscle tone and much more.
Andrew Schmidt, 13, of Becker is afflicted by PKS and was not diagnosed until the age of five and had three chromosome studies that proved negative. This syndrome is a mosaic meaning it is not in every cell and makes PKS difficult to diagnose.
The Schmidts, Nicole, Paul, Lindsay and Hannah — along with supporters, friends and other afflicted families have since held an awareness night at Lupulin to help educate, make aware and seek support for the kids and families affected by PKS. It is through awareness they believe they can make a difference in the daily lives of these families. By providing the correct medical, educational and community support, these kids can thrive and have a beautiful, meaningful and purposeful life like Andrew Schmidt of Becker does.
A few weeks back, Nicole announced that Andrew was having complications with his hips due to PKS that was slated for another operation. She took to Facebook to tell her supporters she probably would have to cancel the event to care for Andrew leading up to his surgery date.
The Schmidts’ good friends — Jesse and Matt O’Neill and Jason and Tiffany Baune — decided to take over the preparations and re-ignite the celebration. After some hard work and dedication, they informed those interested that the event was still on and they were in charge of running it.
That came as a huge relief to the Schmidts and they were grateful the event would go on and be hosted by their friends. About a week-and-a-half before the event’s date, Nicole announced Andrew’s surgery date was moved to the week after the event, so they planned to attend the event at Lupulin.
For more information on the event, contact Nicole Schmidt at 763-482-9284 or at schmidtykid3@izoom.net. For more information on PKS kids, go to www.pkskids.net.