Patient Stories

Henry's Story

Henry Engel is a beautiful child—and the survivor of a rare medical condition. Now, at age two, he cannot walk or speak. When he was an infant and his parents noticed that he was falling behind, Henry underwent numerous medical exams to discover the cause. Learn more

In the News

The faces of Rett syndrome: Portraits of hope, not desperation

Ashley was healthy until she age 3, began to lose her social skills, hand use and language skills. She was the first patient Dr. Huda Zoghbi saw who has Rett syndrome. Ashley inspired a life-time of work, and soon, potential breakthroughs that will help thousands of young women and girls with her condition.

Kayla enjoys school, has many friends, and wants to be a fashion model. NRI research reassures her family and gives them hope that one day the neural pathways in Kayla’s brain can be restored.

Jasmine loves running around outdoors and watching cartoons. She’s also a typical teenager who shuts her door to hibernate in exasperation. But for feeding, bathing and everything else, Jasmine relies on her family.

Rachael has a special champion: Country music star Clint Black. The singer-songwriter’s life has been touched by Rett syndrome through his niece who also had the condition and he raises awareness of the disorder to help girls like Rachael.