Paul and Nicole Schmidt of Becker recently launched a new, non-profit organization entitled, Project 12-04, to celebrate children and families affected by rare genetic conditions — which includes their son Andrew, who has Pallister Killian Syndrome (PKS).
Project 12-04 is named after the date, Dec. 4, which has been declared PKS Day in the state of Minnesota thanks to Minnesota’s governors, Tim Pawlenty, Mark Dayton and Tim Walz. This day was started because PKS is on chromosome 12 with 4 copies of the short arm (p) hence, 12-04.
“We’ve used PKS Day on 12-04 to help share about a cause that is important in our world,” said Nicole. “And to share our story with you so you may have a better understanding or you may connect with our journey on a different level.”
PKS is a rare, genetic disorder resulting from the duplication of the short arm of chromosome 12, which occurs at conception with no known cause. Children with this syndrome suffer low muscle tone, seizures, global developmental delays and hearing and vision loss.
“Our journey started out where we didn’t know where we belonged,” said Nicole. “Seemingly alone with a diagnosis that didn’t fit.”
Nicole went on to say that at Andrew’s fifth birthday, they found that missing piece to the puzzle.
“I was connected with our new ‘family’ of Andrew’s PKS brothers, sisters, moms and dads, now many who are our friends due to this rare genetic condition that has shaped our lives much differently than we once had planned,” she said. “We share our grief.”
Spreading awareness through events is an essential part of bringing light to the rare genetic conditions the Schmidts advocate for. They have hosted golf tournaments, formal galas, and other events and are proud to feature “Operation Xmas Jammies” wher they look to fulfill requests of PKS Kids and others with rare genetic conditions, and provide them with a new pair of Christmas Jammies in time for Christmas.
U.S. Sitework, Inc. is holding their 3rd Annual Charitable Golf Event which is organized to benefit Project 12-04. The date is July 22 from 11 a.m. to 5 p.m. and will be held at the Pebble Creek Golf Club in Becker.
Andrew, who is now 16, is an inspiration to many. He has two sisters, Lindsey and Hannah, who dote on him and love him indubitably. Andrew may not be able to walk without support, or communicate like people expect, but according to his family, he loves.
Andrew loves being included in most activities and he loves to swim, play his piano, and eat ice cream.
“Andrew may not be able to say the words, ‘I love you’, but he shows his love for us with his big blue eyes and lots of kisses,” says Nicole.
Andrew displays profound resilience through health challenges and many surgeries causing set backs and regression.
“He is the strongest person we know,’ says Nicole. “Navigating life with Andrew comes with additional challenges by raising him in a small community where opportunities and exposure to individuals with unique special needs are limited.”
Nicole says though Andrew may require care throughout his lifetime, the family’s goal is to provide him with his best quality of life while creating a better quality of life for a family raising a complex child in a small community.
“We believe there can be better opportunities through sharing our story and the stories of others like us,” she says.
Having a rare syndrome means there is a lack of diagnostics, funding, lack of exposure, knowledge on care, and how to educate or how to help. Rare means isolation, loneliness, advocating and exhaustion. Rare means the family often knows more than the specialist they are seeing as they have access to the latest medical literature through a parent group. Rare means financial strains. Rare means strength, faith, resilience and perseverance. Rare means, there is more to learn.
“God continues to have His hand in our mission,” says Nicole. “Project 12-04 continues to help us grow in ways we otherwise would not be. We are filling our hearts with all the things and meeting others along the way. I feel so privileged to be on this journey.”
To learn more about Project 12-04 or to learn how to help those with rare genetic conditions, check out the website at” www.project1204.com or go to their Facebook page at: www.facebook.com/project1204.