Brian, born in July, 1984, was diagnosed with RTS when almost 1. The textbook picture looked so like him! He has the typical facial features, besides broad thumbs & great toes, hypermobile joints, constipation, excessive hairiness, easy scarring, and was of small stature until high school. He received therapies (occupational, physical, oral, speech) from about age 10 months. He's the middle child, having a 2 1/2-year-older married sister, and a 2 1/2-year-younger brother still at home. His dad & I have been married almost 29 years, and I have been an at-home mom for many years.

Brian's doctor had been concerned about the small head circumference from early on (suspecting premature skull closure--craniosynostosis), and there were developmental delays. His vision was terrible, and he was extremely light-sensitive. It turned out to be congenital glaucoma, which was surgically corrected, but not before there was some optic nerve damage. Bone-blocked tear ducts and the resultant sticky mattering slowly got better as he aged (and grew).

Testes were undescended, and later surgically located up around the navel area. With several options, we decided to do nothing until after puberty. They've now been removed, and Brian receives depo-testosterone injections.

Brian nursed fine, but as foods were introduced, they had to be watery, due to gag reflex. Later, hot/cold foods were a problem, and he didn't like sodas until many years later. He finally got good dental care about age 10 (having small mouth; 2 teeth outside the other top teeth; grinding surfaces don't meet, & he doesn't chew on one side at all), and I still have to re-brush one side (the dentist described the teeth as "very scary" about a year ago--chalky texture).

Brian was slow in developing vocal sounds, and used rudimentary sign language early on. In kindergarten, speech quickly developed. He did so well that we had him repeat kindergarten & 1st grades. Sometimes he could actually assist younger children. His love of books became a love of reading, although his understanding lagged behind. Other interests include music, TV/movies on tape, swimming, and sports with balls. His greatest strength in school was reading, while his weakest area was math, including math-related concepts like "few" or "most".

Difficult behavior ("rage attacks") first surfaced in 3rd grade, leading to counseling, and deducing that overstimulation could lead to "acting up". Various positive reinforcements and adaptations were tried, but he also required (requires) medication (tegretol) to help reduce the outbursts and their severity.

Brian is blessed with not having any life-threatening problems! We are very happy that he made it to 5'3", and he is a bit heavy at 165 lbs. Mentally he is considered "borderline" as to whether he could live on his own. Perhaps in a few years he'll be able to be in assisted living, but he is still learning in self-help matters. He still requires disposable briefs by day and diapers by night, although with our reminders (or a schedule when away from home) he will often use the toilet. That got better in high school, which he attended an extra year, receiving "transitioning" work experience, until he was 21. Brian now enjoys working M-F, about 6 hours daily, for a local employer of "disabled" workers. Part of the time he does recycling (especially likes shredding), and he cleans used books for resale on others.

When little, there was no such thing as strangers to him, and he has continued to make many friends. We can hardly go anywhere in our city of about 24,000 without someone greeting him by name--usually girls! He loves to be the center of attention, and once he started talking, he hasn't stopped! We continue to rejoice in his triumphs, however small, and are extremely glad he's part of our family.

Sincerely,

Karen Burbridge, wife of Jeff, whose middle child Brian, almost 22, has RTS; we live in southern Oregon, USA
Email: jkburb@msn.com