Tate – Dup15q Family Story

May 18, 2023

My husband and I grew up in Tennessee around the Chattanooga area. We got married and I went to nursing school at Chattanooga State. After a couple of years, we had a little girl named Reagan. Reagan was such a blessing to us and we wanted another baby a couple of years later.

My husband and I had a difficult time getting pregnant with Tate. After two miscarriages lost at 9 weeks the doctor recommended my husband and I get tested for genetics. After both of our blood tests and prior fetus tests came back normal my doctor said we were ready to try again. We then got pregnant with Tate and had a healthy pregnancy and delivery. The only thing that was worrisome was a low fetal movement during pregnancy. Tate was born in January 2019 and by March of that same year he began choking while feeding or sometimes after feeds. He was also having trouble maintaining his oral secretions. Tate was slowly not meeting his milestones. Tate was soon diagnosed with GERD, EOE, laryngomalacia, bronchiomalacia, tracheomalacia, developmentally delayed, and hypotonia. His hypotonia was slowly getting worse as months went by. We were referred to a neurologist at this point and tests like MRIs were ordered to try and pinpoint why Tate was having this hypotonia and developmental delay. The neurologist diagnosed Tate with isodicentric 15 at 10 months old. My husband and I were shocked to learn Tate had something genetically wrong with him and we didn’t understand why or how. I remember asking Dr. Suhrbier how this is even possible because our genetics testing pre-pregnancy was all normal. Dr. Suhrbier’s response is the only reason I made it through the next days, and weeks, and still helps me today. He said, “This has nothing to do with those genetic tests that were done. This is how God made Tate in his own special way.”

The neurologist then referred us to the genetics doctor for follow-up. The genetics doctor told us she had been at Erlanger for plus 30 years and had never heard of Dup15 and had to receive information through Vanderbilt in Nashville. She explained it was very rare. We were told Tate might not ever walk or talk and that seizures and behavior problems will be the biggest struggles in our day-to-day life. She provided us with a book to take home about his diagnosis. Tate is a fighter. On my off days, we started attending physical therapy, feeding therapy, and an early intervention program. He began crawling at about 12 months and walking around 15 -16 months old. Tate now attends a head start school which he started at three years old. He has blossomed so much since starting. His teachers brag on how he is more willing to try and play with new things. His attention span grows daily. Our current struggle is Tate refusing to participate with his therapist (speech & physical) at school. He was diagnosed with autism this year and he is on a waitlist for behavioral therapy. Tate is nonverbal and goes to an outpatient speech therapist. She has been one of the most influential people in Tate’s progress and he enjoys working with her so much.

What is your hope for the future of your loved one? For the Dup15q community?: My hope for Tate is that he will speak one day. I like to imagine what his voice sounds like and what he might say to me. My hope for the Duper community is that more resources will become available instead of being put on the waitlist after the waitlist for things like therapy, school, doctor’s appointments, etc.

What advice do you have for newly diagnosed dup15q families?: Have patience with your duper! Every day might be different than the day before, so don’t worry about what tomorrow might bring. Just enjoy the good days and don’t stress too much about the bad days.

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