Navigating a Diagnosis
Getting the Rett diagnosis
The ripple effects of Rett syndrome can go beyond you and your child. A diagnosis can change the lives of your other children and close family members, too.
Because Rett syndrome is unexpected, a diagnosis like this may mean a lot of new challenges and changes. It’s normal to go through a “what if” period and grieve the milestones that your child with Rett may miss.
There's no right or wrong way to navigate a new diagnosis, but it's okay to ask for help to get much-needed support.
Lucy uses her “robot legs,” which enable her body to remember how to walk
You don't want people to see the pain or to see the moments that you struggle…[But] if we keep everything behind closed doors, others cannot experience the joy she brings, but also, the necessities of understanding some of her needs.
Anna, Lucy’s Mom
Guiding the conversation
How do you explain something as life-changing as Rett syndrome to a child, a sibling, or close relative? How do you tell them that their loved one will be able to understand and communicate with them—it may just not be through spoken words?
Parents often struggle with when and what to tell their other children after one child has been diagnosed with Rett. Finding others who share your situation and understand what you’re going through can be helpful.
Lucy Revealed: Impact of Diagnosis
Hear from Anna and Matthew, Lucy’s parents, as they talk about how their two oldest sons adjusted to life after the Rett diagnosis.
Support for newly diagnosed families
Contact the International Rett Syndrome Foundation at
The International Rett Syndrome Foundation (IRSF) empowers families with information, knowledge, and connectivity.
Visit the IRSF's Newly Diagnosed page to get the support and resources you need as you navigate this new diagnosis with your family.
Connect with community
The Rett syndrome community is small but mighty. You’re not alone in this diagnosis, and there are many committed organizations you can join to connect with families in your area, find upcoming Rett events, and get advice from fellow parents and caregivers of children with Rett syndrome.
Writing The Adventures of Bug and Boo
Denay Hooks felt inspired to write The Adventures of Bug and Boo after her daughter, Hannah, was diagnosed with Rett syndrome at age two. Kids were often curious about Hannah’s diagnosis but hesitant to ask questions. The book is based on Hooks’ two eldest children and follows the stories of two siblings—Bug and Boo—on their fun-filled adventures.
Bug has a rare disease and uses a wheelchair, which gives her the freedom to seek a life of adventure with her brother, Boo.
Hannah with The Adventures of Bug and Boo
I want every child to know no matter where you come from, what you look like, what your abilities are, that we all have a special purpose.
Denay Hooks, Hannah’s Mom and Author
