“My heart tells me that parenting a child with Rett syndrome is hard no matter what your attitude or your resources may be and having a community of care and support can make a meaningful difference in our lives.”

Kathy Hunter

New News Alerts

6th World Rett Syndrome Congress
Preliminary Program
Lettre Associations

Kathy Hunter Honored

“Kathy has changed the future for people with Rett syndrome, and the world of advocacy. She has assisted and inspired many newcomers to the advocacy community. She has helped launch several successful organizations, including the Chromosome 18 Registry. Kathy is also responsible for organizing families, forming clinical centers, finding funding, and facilitating the discovery of the Rett syndrome gene.”

Jannine Cody
Chromosome 18 Registry Genetic Alliance

What is RettHelp.info?

RettHelp.org is a unique opportunity for Kathy Hunter to share her knowledge and experience through more than two decades as a leader in the field of Rett syndrome. As a source of authoritative information for the care and treatment of individuals with Rett syndrome, RettHelp.info will provide guidance by some of the most renowned and published Rett experts in the fields of science, medicine, therapy, communication and education. And no waiting in line for an appointment! RettHelp.info is a place where you can find the facts you need, and the care and comfort you so richly deserve in meeting the challenges of Rett syndrome.

Retthelp.org A place where people have a unique opportunity to get answers from Rett experts without having to travel or make an appointment.

Come to us for help with:

  • Daily Care
  • Day to Day experience
  • Management
  • Medical team including the top experts in Pediatric Neurology, Gastroenterology, Communication, Augmentative Devices, Education, Therapy, Orthopedics, Development, Genetics
  • Coping

Perspective

Stacie was ten years old before she got the diagnosis of Rett syndrome. We already knew something was terribly wrong; we just didn't have a name for it. At that time in 1983 and for
sixteen years to come, parents had to wait up to four years for the diagnosis - until their child developed the complete constellation of symptoms that characterize Rett syndrome. It was an agonizing and frustrating wait, but in some ways it allowed more time for parents to adjust to the reality and the devastation of Rett syndrome.

We have come a long way since those days. Parents today have children as young as nine months who get a blood test, sometimes just because they didn't sit up on time. They have little time to adjust to what it might mean because the results can be ready in two weeks and of course, the baby seems typical and is just completely adorable. Some of these babies do not even display Rett symptoms when they get the diagnosis. The parents are shattered by the sudden diagnosis that will change their life in an uncertain future.

They often come to me broken and I try to help them sift through the misinformation and put things in better perspective. Then, I send them to other parents, because I know they will be surrounded with a huge circle of love and care. Parents are the best part of Rett syndrome, a loving, accepting, understanding family to whom we can turn night or day with our joys and sorrows. All of us...with differing opinions, varying strategies and various outlooks, can learn from it all. We need tolerance for those who lack patience, have a difference of opinion, or do not share the same slant on things. Someday you will have been all of these.