Tiffany Ting Cheng (Ting Ting) Home Page

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I Am The Child 

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Welcome!

I am the mother of a beautiful five-year-old girl named Tiffany Ting Cheng who has been diagnosised with Rett Syndrome, as well as a very bright and gifted eleven-year-old boy named Michael, who is a GATE student in the Cupertino School District.

I spent the last few years searching for the cause of my daughter's disability. Like most Rett families, the long journey started with: (1) the dark and painful first stage when we *suddenly* discovered that something was wrong with our lovely and healthy baby girl, (2) *many* visits to pediatricians and specialists to identify the cause of her disability, (3) a shed of light from her teacher, Moon, for the possibility of Rett, (4) intensive Internet research to verify Moon and our speculations, (5) many visits to Rett centers for the diagnosis from clinic evaluation prior to Rett Gene test was available, (6) and, finally, after a chromsomal evaluation through Dr. Uta Francke's laboratory, Ting Ting now has a formal diagnosis of Rett Syndrome.

The long journey of searching Ting Ting's disability now seems to come to an end with a formal diagnosis of Rett Syndrome. However, there is yet another long journey waiting for us, which may not have an end. The ongoing therapy, daily care, neurology and orthopedic cares, medical equipments, appropriate education placement, and etc., all need to be addressed in a team-based approach throughout Ting Ting's life. It's a difficult road for us. But with our persistent and deep love for our daughter, there will be a light in the end of tunnel. Someone said, "God gave you this little angel for reasons.."

I hope to maintain this site to provide the information for the family of Rett as well as for all loving and caring supporting people for my daughter. I hope you find this site useful.

Shei Fun Yeh, Saratoga, CA, USA (shei_yeh@yahoo.com)
Web site of this page:: http://www.oocities.org/shei_yeh
Date created: Feb. 7,2000
Dtae last revised: Feb 17, 2000



About Rett Syndrome

"Rett Syndrome (RS) is a neurological disorder seen almost exclusively in females, and found in a variety of racial and ethnic groups worldwide. First described by Dr. Andreas Rett, RS received worldwide recognition following a paper by Dr. Bengt Hagberg and colleagues in 1983. "
Overview from IRSA

Rett Syndrome (RS) is a neurological disorder seen almost exclusively in females, and found in a variety of racial and ethnic groups worldwide. First described by Dr. Andreas Rett, RS received worldwide recognition following a paper by Dr. Bengt Hagberg and colleagues in 1983.

The child with RS usually shows an early period of apparently normal or near normal development until 6-18 months of life. A period of temporary stagnation or regression follows during which the child loses communication skills and purposeful use of the hands. Soon, stereotyped hand movements, gait disturbances, and slowing of the rate of head growth become apparent. Other problems may include seizures and disorganized breathing patterns which occur when awake.

Apraxia (dyspraxia), the inability to program the body to perform motor movements, is the most fundamental and severely handicapping aspect of RS. It can interfere with every body movement, including eye gaze and speech, making it difficult for the girl with RS to do what she wants to do. Due to apraxia and lack of verbal communication skills, an accurate assessment of intelligence is difficult. Most traditional testing methods require use of the hands and/or speech, which may be impossible for the girl with RS.

RS is most often misdiagnosed as autism, cerebral palsy or non-specific developmental delay. While many health professionals may not be familiar with RS, it is a relatively frequent cause of neurological dysfunction in females. The prevalence rate in various countries is from 1:10,000 to 1:23,000 live female births.

The young girl with RS is well known for her attractive features, and as she grows older, her especially penetrating eyes.
She typically sits independently and finger feeds at the expected time. Most girls do not crawl typically, but may "bottom scoot" or "combat crawl" without using their hands. Some children start to use single words and word combinations before
they lose this ability. Predicting the severity of RS in any individual is difficult. Many girls begin independent walking within the normal age range, while others show significant delay or inability to walk independently. Some begin walking and lose this skill, while others continue to walk throughout life. Still others do not walk until late childhood or adolescence.

Seizures can range from non-existent to severe, but do tend to lessen in their intensity in later adolescence. Breathing abnormalities may occur and also tend to decrease with age. While scoliosis is a prominent feature of RS, it can range from mild to severe. Despite these difficulties, girls and women with RS can continue to learn and enjoy family and friends well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational and recreational activities at home and in the community.

Source: "What is the Rett Syndrome" from The International Rett Syndrome Association.

Please visit the following IRSA site for a comprehensive view of Rett Syndrome.

The following sites contain excellent Rett Syndrome overviews:

Be sure to visit the Belgian Rett Syndrome Association's comprehensive bibliography on Rett Syndrome literature.



Gene For Rett Syndrome

"As Francke and five other scientists report in the October issue of Nature Genetics, the gene instructs cells throughout the body to make a protein known as methyl-CpG binding protein-2 or MeCP2. In the nuclei of cells, the head of the MeCP2 protein attaches directly to the methylated DNA in control regions of target genes, while the tail fastens to a large complex of proteins that compact the target gene and keep it silent.

This is the first instance of a human disease caused by defects in a protein whose function it is to silence other genes. Diagnosing the disorder before the child is four or five years old is often difficult, Francke said. One of the first payoffs from this discovery will be a genetic test to improve the accuracy of early diagnosis. If combined with an effective therapy, the test might allow doctors to ameliorate or forestall the drastic consequences of the disease."

Source: Stanford Univeristy - Press Release.

Please visit the following IRSA site for more information on Rett Gene.



Ting Ting's School and Home Programs

Ting Ting currently has a mixture of home and school programs supported by the school district, as well as other thearpies and services funded by our insurance company and the parents.

Since there are so many people helping Ting Ting from different aspects to meet her unique needs, communcations become a big challenge to us. Thanks to the wide-spread technology of Internet and web sites, we see the golden opportunity of using this new technology to facititate the communications among those people. We hope this web site to be use as a center location of providing information as well as a public forum of discussing issues and exchanging ideas about the education and related servicess.

Please visit the following link for more details on those web pages:
    - Forum for Ting Ting's School and Home Programs.




Books and Videos on Our Shelf

The following link page will provide a list of books and videos about Rett Syndrome and other related disorders on our book shelf. We have found most of them very userful to us.

We also have *many* video tapes of our daughter beginning with her birth in 1994. Those video tapes had added an incredible value to our search of Ting Ting's disability, Rett Syndrome. Her ability to function almost like a normal baby in the first stage of Rett Syndrome is not ony lodged deep inside our memory but also may be reviewed from those videos tapes. Then, on the second stage of Rett, there are those terrible years when our whole family were turned up-side-down. And finally, the thrid stage, our peaceful and happy angel emgers in front of the camera and brings to us lots of smiles and joys.



Thank You 

There are so many people who have supported and helped our family. We would like to take this opportunity to thank all of them. Their love and caring brought us a lot of hope for our beautiful five-year-old daughter.

Your comments and suggestions are highly appreciated. Also please take a moment to sign the following guest book on your visit. And thanks again!


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