March 2000 Issue

We extend our heartfelt congratulations to Tammy and Duff Wrobbel, proud parents of Holland (Holly) Abigail, born February 18th at 9:24 a.m. She weighed 7 lbs. 9 oz., and was 21 inches long.

Our next monthly meeting will be held on Friday, March 10th at 6:30 p.m. and will be a social get together meeting. The food theme is fish, as it is Lent. The meeting location is at CARD — the Collinsville Area Recreational District (Splash City). The address is #10 Gateway Drive. Directions: take 270 East, exit on 255 South, take 55 North, go to the first exit, which is Route 157, take a left on 157, go to the second light, which is East Port Plaza Street, take a left, go to Gateway Drive and turn right, go ½ mile to the CARD Office which is on the left side of road.
Mark your calendars for the May monthly meeting, which will be focused on music and Suzuki, with a mini-concert by Christian Bristol.
Enclosed, courtesy of Linda Orso, in this newsletter, is an informational brochure, Lewis and Clark Supported School-To-Work Transition Program, with an attached reply card.

American Airlines' Miles for Kids program. Program requirements: a) A letter or fax from a non-profit organization, stating that there is a financial need and unable to purchase the necessary tickets at this time

blank.gif  The letter must include child's name, date of birth, diagnosis, purpose for the medical trip, departing and destination cities, dates of travel, name of person(s) traveling with the child, family address and phone number. The non-profit organization is to enclose a copy of their 501c form showing their non-profit status. b) A letter of referral from child's doctor which should include the purpose for the medical trip (medically necessary), child's diagnosis with description, and current medical condition (medical stability to travel). All correspondence should be directed to the attention of Ms. Debbie Ryan (817) 963-8118.

Play Pals Gym offers little ones a lively combination of music, singing, rhythm and activities. Parents and grandparents enjoy the friendship and support of others, too! Various day and evening classes are available for three age groups: 3 to 12 months; 12 to 24 months; and 2 to 3 years old and are held at Saint Anthony's Wellness Center, located in the Alton Mall, second floor. Sessions: March 6 through April 10; May 1 through June 5; June 26 through August 28; August 7 through August 28; September 18 through October 23; November 13 through December 11. Six-week fee: $30; four-week fee: $20. To register call 465-2264 or 462-2222.

Down Syndrome Articles
Excerpted from the novel The Clowns of God, by Morris L. West, St. Martins Press, 1991, Revised Edition.

moonlight is the newsletter of the Riverbend Down Syndrome Association. It is made possible by the William M. BeDell Achievement and Resource Center, 400 South Main, Wood River, IL 62095, (618) 251-2175.

Editor: Victor Bishop
Web Site:

"I know what you are thinking. You need a sign. What better one could I give but to make this little one whole and new? I could do it; but I will not. I am the Lord and not a conjurer. I gave this mite a gift I denied to all of you—eternal innocence. To you she looks imperfect—but to me she is flawless, like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done. She will never pervert or destroy the work of my Father's hands. She is necessary to you. She will evoke the kindness that will keep you human. Her infirmity will prompt you to gratitude for your own good fortune... More! She will remind you every day that I am who I am, that my ways are not yours, and that the smallest dust mite whirled in the darkest spaces does not fall out of my hand... I have chosen you. You have not chosen me. This little one is my sign to you. Treasure her!"

He's one of a kind. Bobby O'Brien proves that Down's syndrome is not a barrier to success by Terri Hogan, Staff Writer, Fredrick News, June 23, 1999. Copyright © Gazette Newspapers, Inc.

Olney resident Bobby O'Brien has crossed many bridges in his lifetime, some of them more difficult than others.
Two weeks ago he crossed a very important bridge as he graduated from Col. Zadok Magruder High School and prepares to enter the workforce as a full-time employee.
O'Brien, who has Down's syndrome, has proven those with disabilities are often those with other abilities.
He has set and achieved goals that any 18-year-old would be proud of. His positive outlook and high self-esteem have helped him overcome barriers to achieve success in school, recreational activities and in the workplace.
After attending classes at Cashell Elementary School and Rosa Parks Middle school, O'Brien started school at Magruder. That was four years ago, and he has attained honor roll status and near-perfect attendance each quarter of each year since then.
In addition to his scholarly achievements, he participated in the JROTC program, reaching the rank of master sergeant, and was recently described by a peer in a school newspaper article as "one of Magruder's most highly respected students."
During his senior year, Jane Wykes, the school's transition support teacher, worked closely with O'Brien to prepare him for life after graduation.
Instead of fulfilling the foreign language requirement, O'Brien opted for the work-study program. To receive his diploma, he was required to attend four class periods in the morning, then work at a paid internship in the afternoon.
As his internship, O'Brien was selected to participate in the Marriott Corp.'s "Bridges ... From School to Work" program. Established in 1989 by Marriott's Foundation for People with Disabilities, the program fosters the employment of young people with disabilities by developing paid internships with local employers for students during their last year of high school.
Steve Mathis, the employer representative for the Bridges program, helped prepare O'Brien for the workplace by teaching him interviewing skills and the importance of a dressing sharply, a firm handshake and good eye contact.
"Bobby was very shy when I first met him," Mathis said. "He has grown tremendously through the program, and has been a real pleasure to work with."
Mathis met with officials at Sandy Spring National Bank in Olney about participating in the Bridges program. It just so happened that the bank needed additional help in the finance department, supervised by Sharon Rhodes, who agreed to set up an interview.
"We were a little skeptical at first, but once we met Bobby, we became very enthusiastic," said Rhodes, who has since become one of Bobby's biggest fans.
O'Brien was hired last October to work approximately 12 hours a week on a paid internship as an accounts payable file clerk. His responsibilities included filing invoices, making new vendor files, stamping invoices with a received date, stamping invoices paid and writing the check number manually on the invoice.
Rhodes said O'Brien's performance reviews have been outstanding, and that he is always on time, dressed in a shirt and tie, and willing to work additional hours as needed.
To say the least, the young man is impressive.
"Down's syndrome has its physical characteristics which we can all see, but having the opportunity to know Bobby and the tremendous strides he has made in his life is so rewarding for all of us at the bank," Rhodes said.
Because of his outstanding performance, Sandy Spring National Bank offered O'Brien a permanent position after graduation, working approximately 30 hours per week.
O'Brien's parents, Jim and Gretchen O'Brien, recently wrote a letter to Sandy Spring Bank President Hunter Hollar thanking him for providing their son the opportunity to work at the bank.
Hollar responded in a letter to the O'Briens that while he was glad to offer Bobby the job opportunity, he suspected Bobby provided as much or more of an opportunity to the bank and its employees.
"Reaching out to someone like Bobby is just another example of how Sandy Spring Bank is a community player," Jim O'Brien said. "We are grateful for their participation in the Bridges program, and for what they have done for Bobby."
Earlier this month, O'Brien received the Marriott Foundation's top Youth Achievement Award for exceptional employment growth and success at Sandy Spring National Bank.
He was chosen from among Bridges participants in Atlanta, Chicago, San Francisco, Los Angeles and the Washington, D.C., area. He was honored by Dick Marriott at a banquet featuring Barbara Bush as the keynote speaker and over 800 people in attendance.
"The Marriott Foundation, our family and our businesses believe that almost everyone can work, and that the strength and diversity of the workforce leads directly to business success," Marriott said. "That philosophy has been an underlying tenet of our family and our companies for more than 70 years."
At the awards banquet, O'Brien addressed the crowd: "I am lucky to have many supporting people who focused on what I could do instead of my disability."
Another of Bobby's proud accomplishments came four years ago, when, at the age of 14, he earned his Black Belt in karate. He began taking karate when he was 8 years old through a county program run by instructor Chip Green, and continues to work privately with him.
"I am very proud of all my successes in school, and karate, and on the job," he said at the awards presentation.
Those who have worked closely with O'Brien credit much of his success to the tremendous support and dedication he has received from his parents. During his acceptance speech at the recent awards ceremony, Bobby thanked them for always encouraging him to do his best.
"When the diagnosis of Down's syndrome was made, we were told that he would not do this, or would not do that," Gretchen O'Brien said. "Instead, with the support of wonderful teachers, other individuals and programs, we have been able to focus on what he can do."
"Bobby feels he is a normal teenager," Jim O'Brien said. "He's always had great self-esteem, and always set goals for himself. For this reason, people have gone out of their way to support him."
In many ways, Bobby O'Brien is like any other kid. He says he did not like doing homework, does not like to shave, and enjoys the breaks while at work. He likes to spend some of his earnings on books and compact discs, and recently purchased Planet Hollywood merchandise while in Baltimore.
But in some ways he's quite different, extraordinarily so.
O'Brien's warm smile, positive outlook and shining personality are truly an inspiration to those around him.
"He touches everyone's life in such a positive way," Wykes said.

Having 'extra chromosome' lends a little extra purpose by Ruby L. Bailey, The Detroit News, October 30, 1995. Copyright © 1995, The Detroit News.

The cashier in lane one needs someone to bag groceries, a customer in aisle four would like a not-so-dented can of sweet peas and the shopping carts are piling up in the parking lot.
These tasks and more fall on the shoulders of Jeffrey K. Perry, courtesy clerk at Farmer Jack's in St. Clair Shores. Perry is undaunted; in fact, he couldn't be happier.
"I like to be busy," says Perry, with a quick smile. "I like to be a part of things."
Perry has Down syndrome, which many thought would exclude him from a lot of things in life.
But he has spent most of his 29 years being included — hiking in the Grand Canyon at age 10, becoming an Eagle Scout at age 18, speaking before the Grosse Pointe Rotary Club just last year.
Perry's lifestyle has earned him a spot on the Sony Jumbo Tron in New York's Times Square as part of National Down Syndrome Awareness Month this month.
A photo of Perry and 49 others with Down syndrome is seen by an estimated 1.5 million people daily. Perry lives with his parents in Grosse Pointe Woods.
"It makes me feel that I play an important role as a role model," says Perry of being a part of the display.
About 250,000 Americans have Down syndrome, a genetic disorder that carries a degree of mental retardation, ranging from mild —like Perry's— to severe.
This is the second year the National Down Syndrome Society has had the display. Photos were chosen based on a mix of activities, ethnicities and ages.
"We want to hit the public with the ideas that people with Down syndrome are just like anybody else," says Lori Atkins, public relations manager for the society. "They have the same hopes, dreams and fears as everyone else. And they have a right to be included."
In recent years, mainstream America has become more accepting of those with Down syndrome, helped, in large part, by the ABC television show Life Goes On. The show starred actor Chris Burke, who has Down syndrome.
Today's attitude is a far cry from when Perry's parents, James and Maxine Perry, were advised to institutionalize their son. The Perrys were informed of Jeffrey's condition right after his birth.
"They said it would be better for everyone concerned if they put him in a home," says Maxine Perry, 70. "I felt he had a purpose. He was mine. Whatever help he needed, we would handle it."
The couple and their then-7-year-old son, James, gave Perry all the support he needed.
They taught him to read, write and sent him to school. He graduated from Grosse Pointe High School in 1986 with a 2.9 grade-point average.
He's a self-proclaimed country music fanatic who can play the drums and who also loves sports.
"We brought him up just like a regular youngster," says his father, James, 71. "We expect no less from him than our oldest son."
Perry ultimately hopes to become a public relations spokesman for the Down Syndrome Awareness Society.
But for now, the shopping carts in the parking lot are calling.
"Having Down syndrome is just (having) an extra chromosome," says Perry, when asked what he would say as such a spokesman. "Stay in school. Study hard. You are able to have a career, a life, to go to college and be who you want."

SIU Professor Promotes Down Syndrome Theory. Immune Approach proving tough sell with colleagues by Tony Cappasso, Staff writer, the State Journal Register, Springfield, IL. November 16, 1998

     Southern Illinois University scientist Leonard Maroun believes he's found a way to lessen the mental damage that accompanies Down syndrome.
     He admits, though, that most other experts in the field think his theories are way off the beam.
     Maroun believes that the key to preventing mental retardation in children born with Down syndrome lies in blocking interferon, an important element in the immune system.
     Maroun has developed a bioengineered product that he says will do just that. He's so sure he's right, he started his own company, Meiogen Biotechnology Corporation, to exploit the product.
     Down syndrome results when people are born with an extra copy of the No. 21 chromosome, said Maroun, professor of immunology and microbiology at Southern Illinois University School of Medicine. He has been researching Down syndrome for more than two decades.
     Normally, each person carries 23 pairs of chromosomes—22 pairs that determine physical features and one pair that controls gender—for a total of 46 chromosomes.
     People with Down syndrome, however, have 47 chromosomes, the extra being a third copy of chromosome 21. The scientific name for this is Trisomy 21.
     Strung along every chromosome like pearls on a necklace are genes.
     The extra chromosome 21 carries some genes holding the genetic code for making interferon receptors, specialized clumps of molecules on the surface of cell membranes, Maroun said.
     "Interferon is a chemical substance secreted by cells when they get infected by a virus," Maroun said. "Viruses need an actively dividing cell so they can use its genetic mechanism to make copies of themselves."
     When interferon locks onto its receptors, the cell responds by slowing down its metabolism, making viral replication difficult.
     According to Maroun, kids with Down syndrome have a greater number of interferon receptors on their brain cells than normal, one byproduct of their extra chromosome 21.
     "These extra receptors make Down syndrome children 10 times to 20 times more responsive to interferon," Maroun said.
     At first, children with Down Syndrome have normal mental development, but the excess interferon receptors on their neurons eventually stunts brain development, leaving them with intellectual abilities significantly below normal, Maroun said.
     Blocking interferon's brain effects would protect kids with the syndrome from mental damage, so he's spent years trying to perfect a way to protect brain cells from the substance. Now, he says, he's got it.
     Maroun said he has developed an interferon antagonist, a substance that once taken would absorb all the interferon in the blood of children with Down syndrome, block the substance's brain effects and lessen the intellectual damage in Down syndrome children.
     Maroun is candid about his financial interest in getting the scientific world to back his ideas. If his theories were accepted more widely, his interferon antagonist might find a backer from the world of venture capitalism. That could mean huge financial rewards.
     But that acceptance has not—Maroun would say not yet—materialized. Neither the scientific world nor venture capitalists have beaten a path to Maroun's laboratory.
     Prestigious science journals have refused to publish his research, he said, although lesser-known but legitimate journals have carried his work.
     The National Institutes of Health, the government money machine that feeds federally approved science, has consistently turned down Maroun, labeling his research as lacking credibility, he admitted.
     Yet despite trashing Maroun's theories in the clubby world academia, Down syndrome researchers were curiously reluctant to comment publicly on Maroun and his work.
     Dr. Felix de la Cruz, chief of the Mental Retardation and Developmental Disabilities Branch of the National Institute of Child Health and Human Development, did not respond to repeated requests for comment on Maroun's theories.
     Dr. Charles Epstein, professor of pediatrics at the University of California at San Francisco, considered by many the dean of research in the field, also did not respond to repeated opportunities to comment on Maroun.
     Maroun said he refuses to be deterred by lack of general acceptance of his work. That's to be expected, he said, when a scientist goes against the grain of accepted dogma. Maroun said the evidence he's right about interferon and Down syndrome is "very powerful in animal models."
     Maroun has said he's submitting a new paper on his genetic experiments in mice specially bred to have an animal version of Down syndrome to one of the most prestigious science journals, which he would not identify.
     The paper confirms his theory that blocking interferon receptors protects brain cells, he said.
Father's Journal
Waiting for Surgery
After Emmanuel was born, I would visit my son at the Intensive Care Unit. I often stopped at La Tropicana Market to buy food. When they saw me with my wife Gloria, they quickly assessed the situation, asked no questions, and simply said, ¿Nació enfermito? Rezaremos. (Was he born sick? We'll pray.) My son's Hirschsprung's pull-through surgery was a success.
     In another development, Maroun said he's gotten preliminary approval from a Down syndrome-related private foundation for enough money to buy equipment for the Meiogen Biotechnology.
     "If the foundation funds the equipment base for our new company, that will put us in a position to be competitive for federal grants and venture capital funding," Maroun said.

Web Wanderings
Planning for Your Special Needs Child. The Life Advice® guide about Planning for Your Special Needs Child was produced by the MetLife Consumer Education Center and reviewed by the Administration for Children and Families, U.S. Department of Health and Human Services and Exceptional Parent Magazine. URL: