NOTE: This page will always be under construction as unfortunately Rett syndrome is a "work in progress". (Our pages are OUR experiences with RETT SYNDROME) This page was last updated: 2/17/10
this site will take you to a fundraising page for helping to raise funds for a cure for Rett Syndorme.
Rett Syndrome is a progressive neurodevelopmental disorder seen almost exclusively in females. Children with Rett Syndrome usually show an early period of apparently normal or near normal development until 6-18 months of life when they cease to acquire skills and lose previously acquired skills.
In 1999 scientist discovered that Rett Syndrome was cause by a mutation of the MECP2 gene on the X chromosome. This gene is known to be a critical factor in brain development and maturation has recently been implicated in other neurological disorders such as schizophrenia, autism, and bi-polar disorder.
RETT Syndrome Association (IRSA) there are over 3000 reported cases of Rett in the world, with more than 2000 being in the United States. "RS is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay. While many health professionals may not be familiar with Rett Syndrome, it is a relatively frequent cause of neurological dysfunction in females.
Although Rett is a devastating disorder which robs our children of many of life's opportunities, you must never give up hope. Vigorous scientific studies are now underway, and for the first time, the future holds promise for effective treatment for Rett Syndrome and related disorders. A better tomorrow is now within reach.
“No longer is there a sense of hopelessness. No longer must we depend upon our own unsteady will power. We are all together now, reaching out for power and strength greater than ours. And as we join together, we find love and understanding beyond our wildest dreams."
-- Helen Keller--
The International RETT Syndrome Association has lots of helpful information you may want to check out. (Look in links or news section for more information.)
Living with RETT Syndrome
Mackenzie was born on a Wednesday, October 16, 1996 at 10:13 am. She was the most beautiful child my husband and I had ever seen. She was and still is the apple of our eyes! She was diagnosed with Rett Syndrome on 2/14/00 from Boston Children’s Hospital in Boston, Mass. I remember the day like it was just yesterday when the phone rang and we were told of the diagnosis of Rett’s my husband & I cried because we finally had an answer after searching for what seemed like a decade, and than we cried some more because we finally had our answer. What do we do now, where do we go? It almost felt like our lives were over as we just were hit over the head with a ton of bricks. I am sure that many parents blame themselves when they find out something is "wrong" with their child, just as we did and sometimes still do. We realize that there is NO one to blame.
It is all part of God's plan for us and is meant to help us to learn and grow. Of course you will have guilt; I think we all go through that from time to time. But the guilt, only takes away from the joy and love which you child can give you on a daily basis.
Our Mackenzie has had a way of touching and softening the hardest of hearts. She is a wonderful, happy & loving child with a special, unique personality all her own. Mackenzie has a smile like no other! She enjoys music & of course swimming or “Water Play” of any kind is her favorite activity hands down! She is a very “special” little girl and has brought much into our lives and those with whom she has touched. We are truly blessed! "That which does not destroy me makes me stronger." - Nietzsche –
We were also blessed with another child, a son, Patrick who was born On Monday, October 19, 1998 at 5:00 pm Sharp! We tried several times to have him on the same day as Mackenzie but she would not allow this and we are actually glad that they have their own special birthdays as they are their own special persons. Patrick is a wonderfully, happy, fun loving “normal” little guy and has kept us grounded on many occasions as we sometimes feel overwhelmed with Rett Syndrome, he has often reminded us that there are other important things in life that just Rett Syndrome. We are grateful to him for that. Patrick is a great brother and has understanding and knowledge beyond our wildest dreams regarding Rett Syndrome and usually he teaches us and those around us much compassion and love.
We are grateful to our family and friends for the continuous support we receive as we could have not made this difficult journey without your help. Thank you all!
October is Rett Syndrome Awareness month!
We hope this page will help you understand Rett syndrome, help you find the resources you may need for your daughter. If ever we could help guide you & your family along this difficult journey, please feel free to e-mail us at: email@example.com
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