After her son was diagnosed with Duchenne muscular dystrophy, Tammy Cate and her husband Chris became a source for other families who are going through the same situation.
The Volunteer Spirit is something that can be felt from UT students, faculty, staff, and alumni. It’s a need to serve the greater community and becoming a beacon to others. That same spirit can clearly be seen in Student Disability Services interpreter/transcriber, Tammy Cate.
In her work in SDS, Tammy works primarily with students, faculty, staff, and community members who are D/deaf or hard of hearing to assist in communication access. Providing access so all students have the same opportunities is the primary focus of SDS, and Tammy plays a key role in achieving accessibility goals for the UT community.
But her day job isn’t the only place where Tammy’s Volunteer Spirit shines. She has become a shoulder to lean on for parents who find themselves in her same situation: caring for a child diagnosed with Duchenne muscular dystrophy (DMD).
“Seth was diagnosed with Duchenne right before he turned 6,” says Tammy. “You hear that diagnosis and go to research it and it all looks pretty bleak. It kind of shatters all of the dreams you’ve had.”
Duchenne is a rare and progressive form of muscular dystrophy, mostly found in boys, is caused by a genetic mutation that prevents the body from producing dystrophin, a protein that muscles need to work properly. Without dystrophin, muscle cells become damaged and weaken, and over time children will develop problems walking and breathing. Currently, there is no cure for Duchenne, though clinical trials are providing some hope.
Parent Project Muscular Dystrophy (PPMD) is a non-profit focused on fighting to end Duchenne through research, advocacy, and support. Since 1994, Parent Project Muscular Dystrophy has been supporting families such as the Cate family and forming a network of supports for other families affected by Duchenne across the country.
“Without PPMD and their network of Certified Duchenne Care Centers, we wouldn’t have known about the clinical trial opportunities available to Seth. We’re fortunate – Seth has a more common mutation and has been able to participate in multiple clinical trials.”
Tammy and her family have taken a supportive role through PPMD as Connect Coordinators, becoming a listening ear to other families in Tennessee and Kentucky affected by Duchenne. “We get together and just talk to each other, become that shoulder to lean on. We would have cookouts and it would give the boys a chance to play and hang out while the parents talked, and became great resources for each other. I also wanted to say the most important thing we have learned as a family is to stop and recognize the blessings along the way. Aside from the DMD diagnosis, we would have not traveled near as much, would have never met the amazing families in this community, and would never know how rich and full life can be. Being a carrier [of DMD], I blamed myself for a long time. Now, I just count my blessings most days. I am amazed at my son and the many families I have met.”
In addition to meeting and supporting other DMD families, Tammy and her family regularly participate in fundraising events through PPMD. “We as a family completed the Disney 5K to raise money for PPMD, Seth’s team was called ‘Bearly Running’.”
Tammy notes that despite Seth’s diagnosis, their family continues to live their lives to the fullest. “He competed with the Disco Robots the last four years and the team made it to world’s last year and won second at state this year before COVID-19 hit. Sadly they did not get to compete at the next level. Next year he has his eyes set on robotics and I can’t wait to see where that takes us. DMD does not slow us down and I am grateful.”
“While my son has been through four clinical trials, five muscle biopsies, countless injections that have left their mark, MRIs and so much more, he still has a joy that is unquenchable. I learn daily from him. Since those trials, we have also had amazing opportunities to visit places like Washington, DC, Clearwater Florida, Orlando, Florida, Arizona, Texas, Los Angeles, California, and the list goes on. Seth was fortunate enough to be asked to do a photoshoot for a drug company in LA and has been an MDA ambassador, a Center for Courageous Kids ambassador and so much more. He also represented Coach to Cure at the AFCA in Nashville this past spring”
In addition to building robots, the soon-to-be 15-year-old Seth Cate discovered his dream career after a visit to Clearwater, Florida: he wants to become a marine biologist and work with sea turtles. He also has a dream to visit Seattle one day and see his favorite team, the Seattle Seahawks.
Tammy also spoke on how she’s taken advantage of working from home, noting that it’s allowed her to spend more time with her family, if only for a few minutes in between meetings. “I also want to say, God has blessed us with the right place to work for all of this,” says Tammy. “For two years, Seth traveled weekly to Nashville for infusions, not to mention our trips to doctors in Ohio every six months. I have been able to work extra hours in the evenings when class was going on so that I could take off for those weekly visits. I can’t express how grateful I am for that. Not only do they support me for those trips, but also as a friend and co-worker. I know this is not the story for every DMD family and I realize how truly blessed I am.”
“Life can happen to anyone; it is critical to be supported when that time comes,” says SDS director, David Ndiaye. “this is achieved through a collective effort from a group of colleagues who not only care deeply about one another but share a common belief of advocacy and support. Tammy has been an advocate for access for many years and has been lending her voice, knowledge, energy, and determination to her son. We are happy to support her and her family through this challenge.”
There is no doubt that Tammy and her family have strength and courage, especially after noting how she wanted to hide from the information when Seth was first diagnosed. But after getting involved with PPMD and becoming another source of hope for families facing DMD, Tammy, Chris, and Seth are all able to move forward and spread knowledge about DMD, while also continuing to live their lives filled with hope.