It's a genetic disorder that is little understood by those who have not faced it directly, but Tammy Rose wants to help people understand. For the sake of her daughter Alicia, 11, and other children like her, Mrs. Rose wants 22Q11.2 deletion syndrome to have a place in everyday language, along with more commonly known disorders such as Down syndrome. It might take a while, but Mrs. Rose is patient.

"Give me time, and everyone will know of it," the Cranberry woman said.

	Bob Donaldson, Post-Gazette Tammy Rose presides over a Halloween cookie decorating session in her Cranberry home with daughters Megan, left, 9, and Alicia, 11, who has 22q Deletion Syndrome. Click photo for larger image.

As one step in the campaign to share information about 22Q11.2 deletion syndrome, also called, more simply, 22Q, or the deletion, Mrs. Rose has organized a support group.

"I want to have a place where we can all come together and discuss our children, and just be able to say, 'Wow, I'm not in this alone,' " she said.

The 22Q11.2 Deletion Syndrome Division of the Pittsburgh Cleft-Craniofacial Network held its first parent network meeting in September. The next meeting will be held at 6 p.m. Thursday in the Cranberry municipal building on Rochester Road.

To prepare for that meeting, Mrs. Rose, 37, a high school graduate with an encyclopedic knowledge of her daughter's disorder, planned to be in Boston this weekend to attend a conference on the syndrome.

"I'm afraid I'm not going to give the parents the right advice," she said. "I want to arm myself with as much information as I can. I really want to learn more about the deletion because this is going to be a tool for my child years down the road."

And there is much to learn. For starters, it is an abnormality on the 22nd chromosome that can cause a long list of health problems, such as heart defects, immune deficiency, cleft palate, developmental delays, learning disabilities and social/emotional issues.

According to the International 22Q11.2 Deletion Syndrome Foundation, the condition occurs in one out of every 2,000 to 4,000 live births, she said. The 2,000-4,000 range represents the variety of effects of the syndrome.

By comparison, Down syndrome occurs in one out of every 733 live births, according to the National Down Syndrome Society.

Mrs. Rose has done her homework. She knows the numbers.

"There are 188 possible problems for children with the deletion," she said.

And she knew when she adopted Alicia at 2 months old that her family background favored the presence of the disorder.

Mrs. Rose learned all she could about what to expect. The prognosis was not promising.

One potential problem is speech and language difficulties. So from the time Alicia was an infant, Mrs. Rose taught her sign language. The education paid off. When she was a year old, Alicia signed her first word, "more" when she wanted a Kool-Aid refill.

Other challenges were not so easily overcome. Among Alicia's symptoms were a fixed vertebra in her neck, and slight scoliosis, submucous cleft palate, learning delays, speech delays and hearing loss. All children with the disorder are at risk for heart defects, but Alicia's heart is healthy.

Because of the wide-ranging combination of behavioral and physical symptoms, Mrs. Rose has found that teachers, and even some doctors, do not understand the syndrome.

"When you go to the doctor and are expecting answers from the doctor, they say, 'Tell me, what is 22Q deletion?'"

"A lot of times, the parents I've talked to, they've had to inform the doctors," Mrs. Rose said.

Until the medical community comes up to speed on the deletion, Mrs. Rose believes parents have to arm themselves with as much information as possible.

The lack of understanding can be frustrating, and so it is Mrs. Rose's mission to get the word out, not only to parents of children with the syndrome, but also to the world at large.

Mrs. Rose has high hopes for Alicia. One day, she believes, Alicia might be able to go to college and learn to teach sign language. She understands that Alicia might never be able to live independently, but with help and understanding, she expects Alicia to share her talents with the world.

"I don't know what life has in store for Alicia," she said. "But I would like to think she would be given a fair chance for everything."

The more information she and the rest of the world has about Alicia's condition, the brighter those prospects, Mrs. Rose believes.