The Ridenour Family

Theo - Rubinstein Taybi

What Rare Disease were you or your family diagnosed with?

Rubinstein Taybi Syndrome.

Please tell us how long ago and how your journey with your rare disease started?

Theo is an amazing child who happens to have a rare syndrome called Rubinstein Taybi.  Despite having undergone multiple surgeries including an open heart surgery and having multiple medical issues, he is one of the happiest children you will ever meet. So much is hard for Theo but one thing is easy: he makes people smile, he makes people feel loved, and he makes us all feel special and rare, just like him.

What is your greatest hope for your child?

Our hope is that Theo and other RARE heroes will find the support and care they need, and that Children’s Mercy Hospital and Kansas City can become a leader in caring for and treating rare diseases and genetic conditions.