Rubinstein-Taybi Syndrome
Patient Stories | Meet Mia!

A Bright Future for RTS Patient, Mia

Written by Jamie and Aimee, Mia's dad and step-mom

We live in a rural Midwestern community where Mia is quite the celebrity. Her favorite pastime is playing with her baby dolls and holding class for them several times a week. When she grows up, she wants to be a teacher.

A Thriving, Social Butterfly

Mia is in fourth grade and attends a special needs class at school. She has loved school since day one and is a social butterfly! School has always been important in helping Mia’s personal development. She didn’t start talking until kindergarten, but her teachers really pushed her in speech class. Now, her vocabulary is huge and she can read about 75 sight words!

She is also getting self-care help at school, such as learning how to brush and wash her hair with dry shampoo. Mia is very capable in school, but sometimes relies on people to do things for her that she is able to do herself. Getting Mia to become more self-reliant continues to be something we work on.

Mia teaches our family about patience and unconditional love. She has surpassed any expectations that we had for her when she was younger. One of her greatest attributes is her ability to love with all of her heart. She is in a great mood 98 percent of the time, but occasionally expresses the need to be sad for a little while. We let her cry for 5 minutes or so, then she will come to us and say, “Mia happy now!”

From One Parent to Another

If there was a piece of advice we’d give to a newly diagnosed family, it would be to be brave and push yourself to not give up. Always remember that you know your child best. If something doesn’t seem right and a test points to nothing, keep pushing and working with your doctors to figure out what’s wrong. One of the hardest things we have had to deal with is having a child that is non-verbal and figuring out what is ailing her, but don’t stop advocating for your child and his or her needs.

Finally, don’t become complacent with your child. They deserve to be the best they can be. There are times we’re so happy with Mia’s progress that it feels okay not to push her as much, but that’s not fair to Mia. She deserves to reach her full potential just like any other kid.

Meet Mia!

A photo of an RTS patient smiling.

Mia is 10 years old and lives with her dad, step-mom and 5-year-old sister.