As first-time parents, Kasy Schug and his wife knew they’d need guidance, information and resources for their baby with Down syndrome. They turned to the Southern Arizona Network for Down Syndrome, or SANDS.
For the past decade, the Schug family has given back to that organization by supporting the Buddy Walk, the organization’s largest fundraiser. Their 11-year-old son, Jacob, recently led the Jacob’s Jets team for the walk, which took place Nov. 12 at Mica Mountain High School.
Kasy, TEP’s Transmission Vegetation Project Manager, initially worked as a contractor for TEP in the mid-2000s, then moved to Portland, Oregon, where Jacob was born.
After Kasy moved back to Southern Arizona and returned to TEP when Jacob was about six months old, Kasy and his wife, Allyson, got involved with the organization and took on leadership roles. Kasy and Allyson have chaired Buddy Walks and Allyson served as president for about four years.
TEP played a role in the connection. Kasy’s former colleague was TEP’s representative at the Buddy Walk, getting involved through a sibling of a player on a football game he coached.
Since then, Kasy has coordinated with TEP’s Community Action Team to bring volunteers to the walk, as well as arranging for printing costs and sponsorships. He also shared information about SANDS with a former colleague whose son has Down syndrome.
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In 2018, Dave Hutchens, former UNS Energy Chief Executive Officer and now Fortis CEO, served as the grand marshal of the Buddy Walk because of TEP’s leadership. Jacob visited Dave’s office to extend the invitation.
“Our CAT team has been tremendous about always staying on top of what we need and sharing the information of how we can help out,” Kasy said. “It’s been awesome working with our community team.”
Like his former colleague, Kasy has also brought in players from football teams that he’s coached to help at the walk.
Although Kasy’s son has some mental, speech and physical growth delays related to Down syndrome, Jacob is enrolled in a fully inclusive sixth grade class and is assigned the same homework as his classmates. Like a typical 11-year-old, he reads every day and he loves playing on his iPad.
The SANDS connections taught the Schugs how to address Jacob’s needs. In turn, the Schugs have formed relationships with other parents so they can teach and learn from each other. SANDS has provided packets and in-person hospital visits to parents, especially for those who are unaware that their babies had Down syndrome before birth. Board members have held workshops and flown out to meet members of Congress for advocacy.
Kasy thanks SANDS and TEP colleagues for their involvement.
“I appreciate how people have supported me and my family. Having a child with Down syndrome really takes that to a different level – the amount of love and compassion that comes from everyone I’ve ever met with Down syndrome,” Kasy said. “Jacob has touched more people in my life and brought us closer than any other scenario that I can think of.”