TSCTALK "Helping TSC affected families & health care professionals around the globe find understanding & education through communication. There are pictures of some of the families affected by Tuberous Sclerosis, and instructions on how to join TSCTalk, a listserv/online support group.

Tuberous Sclerosis A text only page, with information on TS (such as: clinical features, brain & cardiac involvement, genetics, etc.).

Lukes Tuberous Sclerosis Page is a delightful page about Luke, a darling 14 month old boy with TS. There are pictures from birth to the present, etc.

Ethan's Tuberous Sclerosis Page is another family type website, about Ethan, who is a cute little 2 year old.

National Tuberous Sclerosis Association. Our son has TS. It basically involves tubors, something like tumors. These may stay the same, grow, and could cause problems. Our son has multiple tubors in his brain. His story is quite interesting, so you may want to hear the whole story, but I don't know yet where I will put it. He was born in Korea, and adopted by another family when he was only 3 months old. At 8 months of age he developed infantile spasms, seizures. The family was told he would become profoundly retarded, loose all functioning, and was terminal. Anyway, we have finished the adoption for him, he is now almost 4 years old, and an absolute doll. He is "on target" in all areas. We don't know what the future holds for him, but we love him and will always be there for him.

What is Tuberous Sclerosis? Just a short description of TS.

This is Lisa's story about herself, her family, and her TS. She is married and has a daughter, who also has TS.

Amniotic Band Syndrome My daughter, Janice, has Amniotic Band Syndrome. It is a rare birth defect. I guess the best way to explain it is: the amniotic sac ruptures during pregnancy. In our daughter's case, it ruptured at about 5-6 weeks after conception. Most of these children become "natural miscarriages." But in our daughters case, she lived. But, as she moved, the strings of the amniotic sac, wrapped her up, like a kitten playing with string. The "strings" tightened, cutting off her big toe, some tips of some fingers, tightened around her ankle, across her face, and finally around her neck (three times). She was born weighing only 3 pounds 4 ounces, with cleft palate and lip, no eyes, dislocated hips, and the tip of her nose gone. She is a miracle, and I have her story under Our Family, (or you can click Here to go directly to Janice's story.

Amniotic Bands This gives a little bit of information about Amniotic Band Syndrome. I have been looking and looking (surfing) trying to get more information, or parent discussion groups, but there is little out there. Please, if you hear of anything, let me know. Heart Problems The Congental Heart Disease Resource Page...to give parents of children with congenital heart disease a place to find information about specific diseases and other support resources.

Facial Differences

This is not a website, but I felt it sounded so great, I decided to print it out anyway.

Teddy Bears, Made to Order

"Special Let's Face It Bears are free for people with facial disfigurement. Many Let's Face It children and adult members treasure their personal bear. Send a letter and photo describing the person for whom the bear is to be made. There is only a shipping cost. The American Teddy Bear Artists' Guild, of which Kay Peck is a member, will see that you have a teddy bear to love. Kay and her bears were part of a Public Broadcasting System program called "The King of Stuffed Toys." (Kay Peck, 18617 Jirete Road, Odessa, FL 33556; 813/920-6350)"Copied from the Let's Face It Website.

Let's Face It is an information and support network for people with facial difference, their families, friends and professionals. This site opened September 17, 1997.


"Wide Smiles" is a magazine. There are selected articles from the written magazine. It is put together by an adoptive mom, who has three children with Cleft Palate & Lip. There are facts, past Medical Center articles, resource materials, and information for teachers.

Reconstructive Surgery Procedures: about children who need cleft palate surgery. Information, and beautiful pictures showing what will be done during surgery.

Cerebral Palsy United Cerebral Palsy Advancing the independence of people with disability.



Inclusion,
(children who have handicaps, are in a regular classroom, with supportive services when needed)

"Inclusion: School as a Caring Comminity." This is an excellant, online book on Inclusive Education. There are lots and lots of informative, interesting information on inclusion, such as: interviews with teachers, resources, even an area for feedback.

"Inclusive Education-Stories & Strategies for Success. You will find all sorts of information (& encouragement) about inclusion, including: a principal's perspective, a students perspective, lesson Plans, info on MAPS, Multi-level Instruction, and a place to learn about a "Circle of Friends."

"Developmental Disabilities Centre." This is another wonderful site on inclusion (you can tell I believe in inclusion). There is info on topics like: Human Ethics, Training Materials (Assessment, Inclusion, & Violence & Abuse), etc.

Deafness Tyler's Early Intervention Page Tyler has epilepsy & central deafness. His parents say: "This site is dedicated to our struggle to get him the help he needs & the problems we have encountered on the way." They live in Australia, but there are resources for people everywhere.

I've had visitors to this page, since January 2, 1998.


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