We will be back
Who We Are
Project 12-04 is an inclusive and educational community focused on bettering the lives of children and families affected by rare genetic conditions.
Our son Andrew, is the inspiration behind 12-04 along with all the other incredible families affected by Pallister Killian Syndrome (PKS). Andrew Schmidt, 16, of Becker, MN was diagnosed with PKS when he was just shy of 5 years old after first being diagnosed with Beckwith-Wiedeman Syndrome; he finally had a diagnosis that fit him. Since that time, Andrew has experienced the highs and lows of living with a rare genetic disorder. Andrew may not be able to walk without support, or communicate like the rest of us, but boy does he love. He loves being included, he loves to swim, to play his piano, to eat ice cream. Andrew may not be able to say "I love you", but he shows his love for us with his big blue eyes and lots of kisses. Andrew continues to show resilience through health challenges and many surgeries causing set backs and regression. He is the strongest person we know. 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 were limited. While he may require care throughout his lifetime, our 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.
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.