Greatest Creations: My Story

My greatest creations are my two children, Diana and David, whom my lovely wife, Susan, and I created together with God's help.  I am from Milwaukee, Wisconsin and grew up loving the Packers, Brewers, Bucks and Badgers. My wife is from California where we now live.

My two children share a rare genetic disorder, SCN2A, which they inherited from me, the carrier.  Diana got the worst of it.  She was first diagnosed with autism at 2, and shortly after her seizures started at 3, was diagnosed with Lennox-Gastaut Syndrome, a severe form of epiliepsy with hard to control seizures.  As she began to lose her ability to talk, walk, stand, eat, etc., she was diagnosed with spastic quadriplegic cerebral palsy.  After 3 months in the hospital on hospice, on 3/25/25, at only 22, she went to heaven.

Three years younger, David was diagnosed with autism at age 2.  Shortly later we learned he had apraxia which helped explain why he can only manage to say some sounds and partial words.  As he got older, we have learned he has Level 3 autism or profound autism- which I prefer to call severe.  He is very adept at using his assistive technology device or "talker", which has helped him tremendously to communicate.  It is still a challenge and I cannot imagine how frustrating it is for him to have all those thoughts, questions, etc. wanting to come out but be unable to express them.

So, now it is about caring for and literally saving David.  Severe autism is a beast and is wrought with tremendous challenges on top of communication, including behavior, sleep, GI, imume system, neurological, psychological and more.  

Consequently, Wonky Creations is my escape and therapy.  Respite of sorts in the slivers of time I have to spare.  An outlet for my creativity and passions which indlude my favorite Wisconsin sports teams, this wonderful country, Autism and SCN2A Families Foundation.  Willy Wonka and the Chocolate Factory was my favorite movie growing up and my career has been dedicated to creating new products and innovation. 

Hopefully, Wonky Creations can become a means of support for my family.  One of our biggest worries is what will happen to David when we are no longer here or unable to care for him.  Hopefully, this will help toward that end as well.  

Please let me know if you have any comments, questions or suggestions regarding these Wonky Creations or others I could create for you!  Thank you for your support!

Best Regards, 

Steve Skotzke