Richard Engel says his 6-year-old son, Henry, has died

a genetic brain disorder without a treatment or cure. 

Henry Born on Sept. 29, 2015, slow to reach certain developmental as an infant. 

MECP2 mutations cause Rett syndrome, a disorder that 

typically affects girls after their first birthday,robbing them of learned skills   

Henry was special in so many ways. His loving and endearing smile,

the way he connected with his eyes, stole my heart from the time I met him 

His condition progressed and he’s developed dystonia: 

uncontrolled shaking/ stiffness. He was in the hospital for 6 weeks 

but is now home and getting love from brother Theo