Rubinstein-Taybi Syndrome

For the past several years, I’ve shared various medical facts about Rubinstein-Taybi syndrome (RTS) to raise awareness of this rare condition, especially on World RTS Day (You can read those posts here and here.) While the medical facts are extremely important to know and understand, I’ve also realized sharing our life experiences is equally important, since people will see what [...]

Through the years, I have become extremely passionate about raising awareness of things I never knew existed until I was affected. Also through the years, I have been criticized for “jumping on the bandwagon” to simply share a photo, a ribbon or a video. But it’s about so much more than that. Awareness is simply [...]

When my son, Braxton, first got his G-tube at 2 weeks old, the first question I was inevitably asked after explaining his tube to family, friends and strangers was, “So will he ever be able to eat by mouth?” For the longest time, my response was, “I don’t know,” and we genuinely didn’t know. Once [...]

Here is our love/hate ode to Rubinstein-Taybi syndrome a la “10 Things I Hate About You“ (I might have read too many Buzzfeed nostalgia pieces recently). To my child’s rare diagnosis: I hate that no one’s ever heard of you and that you’ll always be around. I hate the way that blue tag in my car hangs down. [...]