Hearing your child say “I love you” is a huge moment for parents, but those who have children with Rett syndrome don’t get to hear those words.
Parents, siblings, doctors and other caretakers hope that changes soon — and recent discoveries suggest that might actually be possible.
Rett syndrome is a genetic neurological disorder that affects 1 in 10,000 to 15,000 young girls and becomes apparent after 6 to 18 months of normal early development. It results in a regression that leads to loss of speech and loss of purposeful hand movements and other motor skills. Women and girls with Rett syndrome can’t feed themselves or even verbally express pain.