Introduction to Parent Resources
RSRF is a parent-driven organization determined to accelerate the discovery of treatments and a cure for Rett Syndrome. As fellow parents we share a common bond. We have rejoiced at the birth of a healthy baby only to watch helplessly as our beloved child loses skills. We share the heartache of an uncertain future. Yet, in the relatively short time since RSRF’s inception (late 1999), a paradigm shift has occurred. The old reality of simply diagnosing and characterizing the disorder has been supplanted by dynamic research and the engagement of elite scientists and laboratories. Rett Syndrome (RTT) has now been shown to be preventable in mouse models of the disorder. With RSRF funding, experiments are ongoing to explore treatment and reversal of symptoms.
Now that your child has been diagnosed with RTT you probably have many questions. What is RTT? What does RTT mean for her future? How will it impact our daily lives as a family? Before we look into these questions, remember that your child is the same person the day after her diagnosis as she was the day before. Having a name now for her challenges does not change who she is.
RSRF is here to help. You are not alone.
We encourage you to register with RSRF. We will send you a copy of the Parent Resource Guide as well as our quarterly newsletters. We'll also subscribe you to the RSRFNewsAlert which will keep you up to date on research and clinical information. To register online please click here.
The first question that most parents ask after receiving the diagnosis is “How will RTT affect my child?” Given the broad spectrum of symptoms that individuals with RTT can manifest it’s a difficult question to answer. In some ways that is a blessing. For every child who, unfortunately, is burdened with severe symptoms there is also a child who continues to make progress and enjoys good health. Seasoned parents will attest to the fact that our children are resilient and often surprise us with the depth of their strength. This fact is a source of comfort during trying times.
A common question asked by parents of newly diagnosed children is with regards to the regression phase. Some mothers and fathers anxiously put their kids to bed at night wondering if their children will wake up no longer being able to walk or use their hands. We now know that not every child will necessarily go through a regression. Some are delayed from birth but continue to make steady progress as they grow. Though difficult, it’s helpful to concentrate on what a child can do and work toward progress than focusing on the possibility of a regression.
Another frequent question deals with the stages of RTT. Is deterioration in skills bound to happen as children age? Again, there are no certainties when dealing with RTT. Increased therapies including opportunities to keep an individual mobile, better nutrition, stimulation will all help to keep a young adult with RTT in good health. Families want to know how their lives will be changed by RTT. While each family will need to adjust to their child’s unique needs, the good news is that life can move forward. It may take creativity, extra time and planning to include your child in family activities, but doing so can benefit everyone.
Please know that whatever your feelings are, they are normal. We are here to help in any way we can. Do not hesitate to contact RSRF with any questions, feedback or concerns.
No one is more motivated to find treatments and a cure for Rett than parents.
- What is Rett Syndrome?
- What is Rett Syndrome?
- Dealing with Rett Syndrome
- Dealing with Rett Syndrome
- Messages from fellow parents
- Resources
- Genetics of Rett Syndrome
- Genetics of Rett Syndrome
- Genetics Primer
- What does my child's mutation mean?
- Can I predict my child's symptoms from the mutation?
- Where did the mutation come from?
- Can Males Have Rett Syndrome?
- Should Family Members be tested?
- My child tested negative. Now what?
- Medical Information
- Medical Information
- U.S. Rett Syndrome Clinics / Ongoing Studies and Clinical Trials
- Common Medical Procedures
- Doctors Familiar with Rett Syndrome
- Therapies and Education in Rett Syndrome
- Therapies and Education in Rett Syndrome
- Introduction
- Physical Therapy
- Occupational Therapy
- Speech Therapy
- Alternative Therapies
- Education
- Research
- Research
- Will Research Impact My Child?
- Research Update
- RSRF-funded Study Suggests Rett Syndrome May Be Preventable
- Press Releases
- Glossary
- About RSRF
- About RSRF
- Introduction to RSRF
- How Can I Help?
- Board of Trustees
- Staff
- Scientific Advisory Board
- Listing of RSRF-funded Research
- Newsletters
- RSRFNewsAlerts
- Parent Contacts
- Parent Contacts
