Rubinstein-Taybi Syndrome
Patient Stories | Meet Devin!

RTS Diagnosis Doesn't Slow Devin Down

Written by Corina, Devin's mom

We live in a small town southeast of Indianapolis, surrounded by family and friends. We enjoy going out to eat and spending quality time together at home. Because Devin doesn’t do well in busy, noisy places, we try to avoid crowds.

After going through a normal pregnancy, I wasn’t prepared for the unfamiliar RTS diagnosis. You’re never told that if things don’t go as planned, you might grieve, and grieving I did. I grieved for the healthy baby we had planned for.

I personally remember going through a resentment phase, constantly asking myself what I did wrong. It wasn’t until we attended our first RTS conference, that at that moment, for that weekend, we did not feel alone. We had found our new family to support and encourage us.

Growing Up and Staying Busy

Devin is very social and knows no stranger. In 2012, he graduated with his Certificate of Completion. That same year, he was crowned Homecoming King and was also on the Prom Court, all of which was voted on by his peers.

Devin stays extremely busy with adult weekend camps, day programs and workshops. He also attends a Life Skills Training Program where he is learning to be more independent.

Many things are important to Devin and his daily routine, including his spinning chair, his blue bucket, his tablet and computer, and his beloved stuffed animal, Barney, who has gone through every surgery with him.

From One Parent to Another

My advice to families with a newly diagnosed child, is to celebrate the little things. Brag about accomplishments that may seem small to others, but are huge for our kids, and share those milestones with those that love you and your child.

Always trust your instincts and don’t be afraid to fight for your child. While the professionals are experts in their area, you are an expert on your child.

If you are married or in a relationship, remember to make time for each other away from your children. My husband and I enjoy cruises and will continue to go on them as long as Devin’s grandparents will help out while we’re away!

Remember to take it easy. Take a breath and be gentle on yourself. Parenting is difficult no matter what and no one is perfect.

Most importantly, you are not alone. Over the 25 years the Devin has blessed my life, he has taught me what it means to love unconditionally, and has shown me how it feels to love someone so much it hurts.

Meet Devin!

A photo of an RTS patient riding his bike.

Devin is 25 years old and lives with his mom, dad, younger brother, and lab, Bella.