Our guest this week is Jeff Wallis, of Valparaiso, IN who is a veterinarian and father of who had a son with Hypotonia, Ataxia, Developmental Delay, and Tooth-Enamel Defects Syndrome (HADDTS) an extremely rare but serious genetic condition caused by a mutation in the CTBP1 gene.
Jeff and his wife, Mindy, have married for 22 years and are the proud parents of Charles 18, who very sadly past away in May, who had Hypotonia, Ataxia, Developmental Delay, and Tooth-Enamel Defects Syndrome (HADDTS) an extremely rare but serious genetic condition caused by a mutation in the CTBP1 gene.
We learn about a host of organizations that played a key role in the Wallis family and on behalf of Charles including; the HADDTS Foundation, University of Chicago Genetics, Kids Work and Jacob's Ladder.
We also learn about an epic cross country RV trip the family took with Charles during COVID to provide him with some extraordinary memories.
While Charles lived a relatively short life, the Wallis family story one is about making the most of the situation and celbrating life.
Show Notes -
Phone – (219) 771-6129
Email – [email protected]
HADDTS Foundation – https://www.haddtsfoundation.org/
Jacob’s Ladder - https://www.jacobskids.org/
Special Fathers Network -
SFN is a dad to dad mentoring program for fathers raising children with special needs. Many of the 800+ SFN Mentor Fathers, who are raising kids with special needs, have said: "I wish there was something like this when we first received our child's diagnosis. I felt so isolated. There was no one within my family, at work, at church or within my friend group who understood or could relate to what I was going through."
SFN Mentor Fathers share their experiences with younger dads closer to the beginning of their journey raising a child with the same or similar special needs. The SFN Mentor Fathers do NOT offer legal or medical advice, that is what lawyers and doctors do. They simply share their experiences and how they have made the most of challenging situations.
Check out the 21CD YouTube Channel with dozens of videos on topics relevant to dads raising children with special needs - https://www.youtube.com/channel/UCzDFCvQimWNEb158ll6Q4cA/videos
Please support the SFN. Click here to donate: https://21stcenturydads.org/donate/
Special Fathers Network: https://21stcenturydads.org/

SFN Mastermind Group - https://21stcenturydads.org/sfn-mastermind-group/
Special thanks to SFN Mentor Father, SFN Mastermind Group dad and 21CD board member Shane Madden for creating the SFN jingle on the front and back end of the podcast..