Our kids keep us motivated and inspired. Click on the stories below to read more about our patient stories!
Dylan & Logan
The diagnosis took about 5 years, all while we were desperate for answers and worried sick about the future of our kids. Receiving a diagnosis was an indescribable feeling
In 2012, Dr. Ian Krantz at CHOP made a miraculous breakthrough in the sequencing of Leta’s DNA. CHOP unraveled her genes and uncovered a rare syndrome that at the time only 2 other children in the world shared with her.
Even though he has faced many challenges, and will continue to face them throughout his life, he is happy, healthy, and thriving, and continues to learn and love life.
He loves to ride his bike and color and is a whiz at puzzles that even his parents give up on. He has so many positive things going for him. The trick is let other people recognize his potential instead of his challenges.
“Kabuki syndrome is so odd in that it is different in every child. That’s why I’m so excited CHOP is having a special clinic for our kids. It’s a phenomenal hospital.”