Rubinstein-Taybi Syndrome
Patient Stories | Meet Jason!

RTS Patient Inspires Those Around Him

Written by Karen and Rob, Jason's mom and dad 

We are a typical family living in suburban Ohio. My husband Rob and I both work and our kids go to public school. We enjoy hiking and being together as a family.

Our son, Jason, has a busy schedule and is involved with Cub Scouts, Special Olympics, church, and other school related activities. He is in sixth grade and attends class in a separate, modified middle school. He has social studies, science and electives with typical kids, but his curriculum is modified. For reading and math, he is in a smaller class with an intervention specialist. And even though his comprehension is a bit delayed, he can almost read at grade level, which we are very proud of.

A Million Dollar Smile

Jason is a delight. Everyone in our community knows him for his “million dollar smile,” and loves him. It’s been great to see all of the people that are committed to helping him succeed: teachers, therapists, coaches, etc. We’ve met many wonderful people that we would have never known without RTS.

We have a long list of reasons to be proud. Jason does fairly well academically and has received school awards for compassion and perseverance. He also received a student-nominated award for friendliness and helping others. He has completed all the requirements necessary to achieve each level of Cub Scouting advancement. He is good at soccer and thriving in Special Olympics, winning medals for basketball and track. Jason even participated in the summer games last year and stayed in the dorm with his team. We were so thrilled with his independence!

From One Parent to Another

If there was one piece of advice I’d give to a newly diagnosed family, it would be to enjoy each day and each milestone, whenever it comes. You can’t know the future for your child. Instead, focus on what you and others can do to help your child reach his or her full potential. Let your child determine that potential, and don’t try to measure against other kids, even those with RTS. Your child is unique, and wonderful, and will show you things about life you never imagined.

Meet Jason!

A photo of an RTS patient.

Jason is 12 years old and lives with his mom, dad and older brother.