Thursday, March 5, 2015

A Lesson in Life

It's been more than ten years since I sat in the lecture hall of a college campus, but that's exactly where Kyle and I found ourselves today. Only this time, we weren't simply observers.

Shortly after Grace was diagnosed with INAD, I was corresponding with her geneticist at Children's Hospital, and she asked if we would be interested in talking to some of her genetics students at Washington University this spring.  Although she told us we could answer, "not now" or "no, never," but we didn't even hesitate for the chance to share our story.

Dr. Beth Kozel said she was teaching medical students about the importance of using exome sequencing in clinic, which is the genetics test Grace had done last summer. Since the test is relatively new, said she thought it would be good for students to hear about the impact of this technology from a parent perspective as well.

We said yes from the get go, but this was the part of her e-mail that really touched me, "To become good doctors, students need to learn how to approach conversations like this, and having insight from a family like yours would be wonderful."

So, today was the day.  Dr. Kozel started the lecture at 8:30 a.m. and asked us to be at the lecture hall by 9:15 for our portion.  She even provided someone to meet us by the parking garage and lead us to the hall, which was very helpful, and we enjoyed all the inside walkways.  And many would be surprised to learn we were even early!

Kyle and I got to sit in on the last part of her lecture, and it made us wish we had been able to stay for the entire part to learn more about the exome sequencing and the medical ethics behind some of the testing and results.

She had asked earlier this week if we were planning to bring Grace with us, and we really hadn't planned to. We thought it would be nice if she could keep her regular schedule and go to school, so we stuck with that.  Instead, we sent lots of pictures, which were put into a collage on the wall behind us.

Then it was our turn to talk.  There were between 40 and 50 medical students in attendance, but we weren't really that nervous.  We were just honored to share our story, including how we ended up in genetics and what the process and results meant to us and our future.  It also gave us a chance to talk about the research study, also happening at Washington University.

We even had a chance to field a few questions from the audience.  One student asked if we were planning to tell Grace she had this genetic condition, which is not really something we had ever thought of. Since Grace has very few words, chances are she won't understand. But we felt like we would talk to her about it, even if she did understand.

Another student asked us if we would do the clinical trials if they ever became available, and we would have to talk about that possibility in the future, but we were certainly excited about the prospect.

One of the best questions came from a student who asked us to tell the students as fellow doctors how to share information like that with families, and we encouraged kindness and compassion.  Aside from all the medical jargon and test results, what I remember from our visit when we learned about Grace's diagnosis, was the compassion Dr. Kozel showed us when she told us to never give up hope.  We told the students to remember that these children may just be a chart or a file number to doctors, but to parents, it's their whole world, and to remember to always show kindness.

After we finished our 30-minute presentation, we were touched that several students came over to thank us for coming to class and sharing our story.  One even stopped us in the hall to ask a few more questions.  It turns out, he had just met Dr. Kotzbauer (who is conducting the research study) not long ago to learn more about his research.  When he learned how rare INAD was, he said he was surprised to meet us after having just talked with Dr. Kotzbauer about his research.

As we walked back to the car, we talked about this amazing opportunity we had. Though we would have spoken for free, the university offered us an honorarium for our time.  We talked about it, and agreed to take it, with the sole purpose of returning it to the university for the INAD study.

This was the second class we have spoken to about INAD and our journey with Grace, the first being Janet Walch's class in Morrisonville. We hope that it's not our last opportunity to share our story.

Maybe someday, they will ask us to come back and talk to medical students about what it was like to be part of the fundraising efforts and research study when they find a viable treatment for the INAD kids. 


1 comment:

  1. What a wonderful opportunity to tell Gracie's story. I know the study may find the cure and what a wonderful memory to share with Gracie when the time comes. Her doctor seems to be very well respected and there is nothing better than having the best. Prayers to you all.