Support Us
Survivors | Rett's Roost

Treatment Outcome: Survivors

The Goodman Family

The diagnosis… came as a bittersweet victory. Addie’s mom, Angie, recalls, “I had to fight for the diagnosis from a top specialist from Cincinnati Children’s. I was watching my daughter get worse so I felt some relief once treatment started.”

The Clinton Family

“For me it was like the end of the world.  I was so terrified and devastated.  Nothing seemed normal or real.  I literally fell on the floor.  It was like I opened a door and walked into a horror movie and the door closed behind me.  Nothing would ever be the same after that point,” Breslyn’s mom said. 

The Iorio Family

In October 2015, the Iorio family, Melissa, John, and 4-year-old Luke, should have been planning their Halloween celebrations. Instead, some unusual bloodwork sent the family to Boston Children’s Hospital…

The Hewitts

Through everything Kailyn has grown to be an amazing young lady with her own unique quirks. Her mom Alison knows what her daughter is facing and told us, “I am broken everyday wondering to myself just how far this disease is going to go. How much of her life it is going to take away, and when and if it does, have I done enough to fight it?”

The Silvani Family

It’s hard to describe what it was like. Time stopped. Priorities changed in an instant. Suddenly our future was a giant black hole, a giant question mark, with a good possibility our child would die despite our efforts to save him.